Discussion #2 – Symposium speaker series – Dr. Robin Friedlander

The thing I consistently read and hear about is improving access to support for children and parents. But we don’t stop being autistic when we turn 18. It is orders of magnitude better to be autistic as a child than as an adult due to the many services available to children and the almost non-existent supports for adults. The partitioning of autism services into ONLY children and NOTHING for adults is problematic and discriminatory. If you make a service for children and parents, there needs to be an equivalent transitional service for adults who have aged out of the youth-centric programs. What happens to these children who grow up with an army of services supporting them when they turn 18 and the plug is suddenly pulled?

What services and supports in a child’s early development can best benefit children and families experiencing complex behaviours before they reach middle school age?
I believe its not so much a matter of services and supports but rather who is providing those services and supports. Often times, we have funding being available but not trained professionals to work in the field. Therefore, having higher wages may work for staff retention or even staff hiring processes… but this does not mean that such staff has the necessary tools/training to provide the right support for children and their families. I consider training the staff a key aspect of support and services., by having proper, continuous, and hands on training, we can better work closely with families so that we all give children(and their families) the support they need.

Should behavioural needs be included in the assessment in determining services and funding for a child/youth and their family? Why?
Definitely yes! behavioural needs cover such a wide scope of services, many of which are becoming expensive. We cannot assume that someone with not so many “behavioural needs” needs the same amount of services than those who have more needs. Including behavioural needs allows for a better distribution of funding as well as providing a more rounded picture about the child which in turn, can help us find the support and services that are most suitable for them.

What services and supports in a child’s early development can best benefit children and families experiencing complex behaviours before they reach middle school age? Should behavioral needs be included in the assessment in determining services and funding for a child/youth and their family? Why?

It is easier to answer these two questions together. I work as a therapist at a publicly funded child development centre (CDC). I work mostly with school-aged children in school settings, and also consult with children and families at our centre or in homes and community settings. I also consult with school staff, and part of my work is also with toddler to preschool aged children. I used to work in an early intensive behavioral intervention program for children with ASD, so I have some perspective.

Behavioral needs should be included in the assessment to determine services. It is important to clarify that the term “behavior” is inaccurate and unhelpful on its own. Families, doctors, or others might use the term “behavior” in their referral, but after some assessment we learn the challenge actually relates to a deficit in the child’s skills, which causes problems with family routines and interferes with social interactions. Equally important is that there may also be a mismatch between the caregiver’s expectations and skills, and the child’s capacity and skills.

Typically, the “behavior” arises when there is a challenge with some daily routine or activity. For example, the child can’t: sit at the table to eat (picky eating may be part of it); toilet or use the bathroom, fall or remain asleep, participate in dressing routines, play with a friend, wait for something, explore toys appropriately, or manage transitions. The answer to solve any of these isn’t a simple fix to “correct the behavior”. It is often a complicated process to figure out how to help improve the child’s skill deficits, help the parent or caregiver adjust their actions, and adjust the environment and/or the task.

Core skill deficits that lead to behavior are often linked to challenges with attention skills, cognition/inflexible thinking, social skills, emotional regulation, or delayed language skills. A therapist might then work with the adult and child to try to improve some of these core skill deficits. Another approach that happens at the same time is to adjust elements of the task to make success easier. Success is possible by minimizing the demand on the child’s skill deficit.

Improving a caregiver’s skills and capacity is also an important part of treating “behavior”. Sometimes a caregiver may not recognize the child’s skill deficits, and they may not know how to adjust their own actions so the child can be successful. By improving the caregivers’ skills, the child is more successful. Caregivers need to be the ones who can put the ideas into play, since they are with the child most of the time.

As Dr. Friedlander noted, improving a child’s communication skills can also improve behavior, often because it reduces frustration. SLP services can help a non-verbal child use an augmentative communication device, like TouchChat on an iPad. Other children benefit from simpler tools like visual supports and low tech communication aids. Therapists and early childhood education professionals often implement these ideas in childcare settings. There is a shortage of these workers, however, and if families or childcare staff don’t learn of these strategies, small behaviors can escalate to more extreme ones.

An additional strategy may be to improve the child’s self-regulation skills. If a caregiver understands their child’s regulation needs, they may then be able to provide the right co-regulation supports. This might include strategies to reduce sensory challenges, minimize executive functioning deficits, or improve emotional regulation skills. There may also be strategies like social stories, or behavioral strategies like token economies. Many self-regulation strategies can be taught in a group format to parents and caregivers, at least initially. Greater 1:1 follow up can occur afterwards once the caregiver has some background and education. Our CDC uses this approach and it works.

In many cases of ASD there are other comorbid developmental diagnoses and reasons for the behavior. For these children, solutions may require multiple professions (SLP, OT, PT, supported child development consultant and aid). Children with ASD often have fine and gross motor deficits that accompany their social and language deficits. There are many children with more severe ASD who could benefit from early intensive behavioral intervention (“ABA”) type supports. For children with severe autism, however, ABA approaches seldom cover all aspects of function unless there are other therapies. If a child with ASD and their family gets intervention early on, the child may never get to the point where extreme or violent behavior arises.

While I also know of similar case scenarios like Dr. Friedlander described, many crisis situations can be avoided if they are caught early, when problems are minor. Child psychiatrists usually only become involved when small problems grow, multiply, and become major crises for the family and school. Only then, after the family and child usually have missed critical windows of development, is medication part of the solution. Anti-aggression medication is often an important element, especially as children get older, but in my experience there’s usually a history of missed opportunities where early intervention therapies and supports could have made a difference.

CDC’s are often the entry point for most families to get help for challenging behaviors. We are often the ones who recommend the child see a doctor or pediatrician, often to get referred for an ASD assessment. Typically, we see families struggle with behavioral challenges when their child is 2-4 years of age, often when their child fails to play with friends and meet other typical communication, social, play, and behavioral norms. Unless a family gets help early, many children have no diagnoses by the time school starts. This is especially true with the long IHCAN waitlists, and that many neurodevelopmental diagnoses require specialized diagnostic clinics.

The challenges get worse when children are unable to access daycare, preschool, or after school care because of behavioral problems. If the family can’t access supported child development services, the child often isn’t permitted to attend childcare or preschool. Supported child development consultants can play a critical role to help children be successful at these settings (and not get kicked out). More of these workers are needed because there are long waitlists and too few workers for the wide spread size of the problem. There have been recent moves from the government to bump up wages and increase the number of these positions in CDC’s, which is good, and long overdue.

Without positive early childcare experiences, Kindergarten is much more difficult. Sometimes it is only once the child enters school that the severity of the problem gets real attention from the medical and special education systems. The child may get extra school support because of disruptive behavior, but as Dr Friendland alluded to, schools generally struggle to help children with challenging behaviors.

There are many reasons for this. Most education assistants (EA’s) do not have specific training for behavior, and there is now a widespread shortage of EA’s. Only the Surrey school district has some ABA trained EA’s, largely due to parent advocacy. If a district even has them, there are too few school district behavior consultants to meet the demand. In the districts I work in, there are no board-certified behavior analysts. Even if school districts had board-certified behavior analysts, district staff don’t have the training, time, or resources to take on this level of intervention.
The young student with severe behavior experiences more exclusion, has fewer positive social experiences, and learns less. It is no surprise that these children may get additional psychiatric diagnoses as they age.

The inclusive education model in schools has failed. The idea of inclusion is great, but it costs a lot more to do properly, and schools are not getting more staffing, training, and outside help to make inclusion work. Resource rooms get closed because they aren’t thought of as inclusive, yet they are better for some kids. From 2001-2016, BC’s public education system experienced a lot of cuts to the special education system. The pandemic also had a negative affect. Since then, many qualified special education teachers have moved on after getting burnt out. The current inability to deal with complex behaviors in school settings is one of the downstream affects from these events.

When extreme behaviors occur in school, the whole system of support in the entire school breaks down. This is especially true when several behavior challenges occur at the same time or in separate classes. This is common when it is typical to have 3-5 students per class with support needs. EA’s get pulled from other students who need in-class help, so they lose out. Learning resource teachers abruptly cancel take out sessions for reading to go deal with the behavior. Vice Principals can’t cover for absent teachers. Sometimes whole classes have to evacuate to de-escalate the situation, and to protect both the student and peers from harm. Schools use narratives like, “the classroom is too much for him”, or, “he’s not ready”, and caregivers are asked to take their child home. Schools just don’t have adequate staffing, resources, and access to specialized services. The system isn’t designed for it.

Sometimes a child with extreme behaviors may be enrolled into a special MCFD or health authority program. These are usually done in a small group, high staff to student ratio setting (like a resource room). This allows the child to learn skills and, potentially, for caregivers and educators to learn effective strategies. To my knowledge, most of these external behavior school programs don’t provide graduated support for the child so they can successfully return to their home school. Instead the student is dumped back into their home school and they aren’t successful. This is because there aren’t enough services and supports for the child to transfer skills from the specialized program to their home classroom. There have been several successful pilot or isolated district programs that blend small group “resource room” types of service (i.e., SELC+ program at Norquay Elementary), yet these models haven’t been expanded province wide. Such programs typically remain in a pilot stage but don’t get expanded across the province. This needs to change.

Part of the problem exists because there is siloing within and between ministries and this creates bureaucratic funding barriers. For example, there is an unnecessary divide between child mental health services and those targeting neurodevelopmental and physical disabilities. Rather than treat the child as a whole being, parents must search for which service can help their child. MCFD child and youth mental health offices (CYMH) can only see children with mental health problems, and these offices won’t see children if there is any sort of neurodevelopmental diagnosis. For example, they won’t see children with ASD, even though a lot of functional day-to-day problems may relate to anxiety, phobias, OCD, and emotional challenges. CYMH offices aren’t budgeted to hire OT’s, yet OT’s are trained in mental health, and could make a big difference.

Trauma is another area that affects challenging behavior. Parents may have their own unresolved trauma and attachment problems because of adverse early childhood events, and this makes parenting a challenging child much harder. These families qualify for CYMH services. Of course, parent-child attachment issues also occur with children who have developmental delays, yet these children and families can’t get services at a CYMH office.

Meanwhile, a CDC’s mandate is to help children with physical and developmental concerns, but must exclude children with mental health concerns. CDC’s often help kids with self-regulation, emotional, or executive functioning challenges because they are part of many neurodevelopmental diagnoses. For example, children with ASD and ADHD often have anxiety, yet our CDC cannot hire counsellors, social workers, or those with special mental health training because we aren’t funded for those positions.

Attachment disorder is often a factor for children with behavioral challenges, and ASD and other neurodevelopmental conditions also require help in this area. Our CDC occasionally runs attachment focused, “Circle of Security” workshops for families, but they don’t happen as often as they are needed due to funding limitations. These families experience a lot of stress and therefore also need regular family support for this type of intervention to work. Our CDC doesn’t have adequate levels of staffing to provide this kind of ongoing support for families.

It is wrong that parents can’t take their child to one publically funded location and get the services they need. This is a good reason to put both CYMH services and CDC services under one roof. The proposed Hub model might be able to do this, but only if it is structured and funded properly. A Hub model requires CARF accredited, public non-profit wrap-around family centered services, skilled case management, system navigation, long term planning, and detailed coordination between all stakeholders.

As it relates to the workforce to help with complex behaviors, CDC budgets have never had enough funding to hire enough therapy professionals to meet the need and to reduce waitlists. There were waitlists 10 and 20 years ago, and since then the funding hasn’t meaningfully increased, BC’s population has grown, and ASD referrals have exploded.

Thankfully MCFD has provided funding for our CDC to hire a few rehabilitation assistants (RA’s), which will help reduce the load on therapists. With proper training, RA’s can run groups, do support tasks, and provide additional 1:1 support. RA’s can relieve therapists from non-direct and preparation client related tasks, and thereby free up therapist’s time to do higher skilled tasks. Providing funding for more support staff like RA’s is a good idea and MCFD should expand this further.

CDC’s need more OT’s and SLP’s to meet the needs of children with complex behavior. But it is very hard to attract therapists. Pediatrics is a unique and specialized area, and most OT’s are only trained to work with adults. Publically funded pediatric jobs also don’t pay any more than other positions, so there’s little incentive for new or established therapists to switch from another practice area. Our CDC offers lots of supervision and training for potential new therapists, but we are unable to attract candidates. Concrete monetary incentives, like relocation stipends, or a special union wage grid might help more therapists consider taking a job at a CDC.

It may be illuminating to note that Canada ranks 33rd out of 35 OECD countries for GDP spending on early childhood services (See Early Years Study 4: Thriving Kids, Thriving Society, 2020). To this point, the BC government’s move to expand the Ministry of Education to include childcare is a positive step. Reliable MEd funding, in comparison to MCFD’s unstable competitive tender model, elevates the importance and stability of early childhood education funding and services. Hopefully it will expand childcare into more schools and broaden their function to integrate early childhood and family support services.

I absolutely believe that behaviours should be included in the assessment in determining services and funding for child/youth and their family. In the current system/structure, only two categories/diagnoses allow for the financial support to give families some services outside of free community services. These are Autism and Intellectual disabilities and these eliminate several other extremely disabling conditions that cause severe behavioural concerns such as ADHD, Tourettes, ODD, OCD, RAD, etc. If we opened up the assessment process to include behavioral considerations this would allow for acceptance of children based upon the severity of the effects of their disorder and not the title of their disorder. As we have learned that these disorders are a spectrum and effect each child in different and unique ways.