Linda Cheung, a mother of two children with autism in Toronto, counts herself lucky. When her now-teenage sons were diagnosed with autism, there were virtually no wait lists for some autism services.

But her family still struggles at times to access the services they need, and sometimes pays out of pocket for these services while they are on government wait lists. Even when her family has received government funds to purchase services themselves, Linda has been frustrated by a fragmented system that makes it hard to locate appropriate providers. For families like Linda’s, navigating the current system can feel like a full-time job.

Autism in Canada

Autism is one of the most common developmental disabilities in children, affecting one out of every 68 children. It is a neurodevelopmental disorder, in which children have difficulties understanding and reciprocating emotions, using and comprehending non-verbal communication (such as making eye contact), and participating in social relationships. The severity of autism is determined by a child’s level of communication impairment and the types of restricted, repetitive patterns of behavior they display. Symptoms of severe autism include disruptive behaviours and difficulties in performing their day-to-day activities, such as eating, bathing and communicating.

Although there are no cures for autism, there are therapies such as Applied Behaviour Analysis (ABA), that have been shown to help improve the functional abilities of these children. ABA uses learning theories to systematically change behaviours, and has been used to increase children’s communication, social skills, activities of daily living, and academic skills. Intensive Behavioural Intervention (IBI) is perhaps the most frequently used and best studied method of ABA. Generally, these therapies are provided by clinicians, though parent-directed programs are also used.

For most families, caring for a child with autism is a rewarding experience. However, it can also be challenging. Children with severe autism often require assistance with tasks, have frequent medical appointments, and may require near-constant supervision. The potential emotional, physical and financial stress associated with providing this level of care can be detrimental to a family’s wellbeing.

There are times when a child’s needs may exceed what a family is able to provide and families look to programs outside of the home for help. However, timely access to government funded programs is often difficult and few families can afford to pay out of pocket for these services over the long term.

Autism services in Ontario

The past 50 years have seen a change in the philosophy surrounding service delivery for Ontarians with autism. There has been a shift away from residential placements and a greater emphasis on community based services such as respite care, day programs or life skill programs. The government has maintained a small number of residential or group-home beds for use by children with significant care needs or behavioural concerns, but the vast majority of services are provided in the community to children living at home.

In Ontario, the majority of community-based services are provided by the Ministry of Child and Youth Services (MCYS). In general, families access governmental programs at their local developmental agencies. As of 2013, there were approximately 90 programs providing behavioural therapy to about 2,000 children. All children with autism can apply for skill-based, group ABA. For IBI, which involves intensive one-on-one interventions, only children with severe autism are eligible for government funded IBI programs.

There are, however, a number of inconsistencies in the method of IBI and ABA delivery among the agencies. For example, agencies do not use a standard method to determine a child’s eligibility for services or when they will be discharged from the program.

The process for accessing other developmental services, such as respite care and day programs is similar. Families can access services through multiple entry points, by applying to one of the 170 developmental agencies in the province, the MCYS tells us. The result is a disjointed, complex system that is difficult to navigate for both clinicians and families. In the end, “it is difficult for children to access the right services at the right time,” says Peter Szatmari, chief of Child and Youth Psychiatry at the Centre for Addiction and Mental Health and Sick Kids.

Families face significant service gaps

There is an obvious gap between the needs of children and the services available.  For example, there were approximately 1,750 children on wait lists for IBI in 2012, and it is not certain how long children are waiting for services. A 2013 Auditor General report estimated that even if a child received a diagnosis of autism at the age of three, most only received treatment three years later. For ABA, only two thirds of eligible children received treatment by their sixth birthday. Based on published outcomes from provincial IBI programs, we know that children with later access to these programs do not make the same gains as those with earlier access, says Melanie Penner, a developmental pediatrician at Holland Bloorview Kids Rehabilitation Hospital. By extension, she adds, “wait times for these programs decrease Ontario’s return-on-investment for IBI.”

Some children are better served by the current system than others. A key determinant of the services a child receives is a family’s ability to advocate for their child, says Jackie Sumsion, program supervisor at Aptus, a developmental treatment centre in Toronto. Families who are not fluent in English and of lower socioeconomic status are likely at a disadvantage. Families in smaller, more rural communities also face difficulty accessing services. This is in part because of a decreased access to clinicians who have expertise in autism, says Szamatri.

Even for children who already have services, their needs may change over time, says Sumsion, and so they may face additional wait times as they apply for access to new services. Depending on the length of the waitlist, these children’s needs may have changed by the time they reach the top of the list, delaying the process even further.

The disparity between families’ service needs and the amount they receive can ultimately result in families facing crisis situations. When this happens, families often turn to the acute health care system for help, says Szatmari. However, a hospital admission is a temporary solution, because if families are not equipped with better supports at home, this cycle will likely continue after their child is discharged.

Out-of-home placements can offer another option for families facing crisis situations or who become overwhelmed. These placements can take different forms, ranging from day programs, to short-term respite programs or long term residential placements. A recent study from Alberta showed that one sixth of families with a child with severe developmental disability, including severe autism, have seriously considered out-of-home placement for their child. More importantly, these considerations were largely driven by the services families received, rather than the severity or characteristics of their child’s disability.

However, the availability of residential placements for children with autism is limited, and dependent on the capacity of other parts of the system.  At Aptus, for example, all six residential beds are being used by individuals over 18 years of age who are awaiting a spot at an adult long-term residential program.

A 2005 Ontario Ombudsman report,  “Between a Rock and a Hard Place,” brought to light the drastic measures that some families are required to take when they face crisis situations, including making the difficult decision to give up custody of their children in order get them access to the services they need.  Unfortunately, this continues to happen 10 years later, according to the team at Aptus centre, though the exact number of children given up for these reasons is not known.

Systematic change required

For families, clinicians and government officials, the ultimate goal is for children with severe autism to have enough community supports to allow them to remain at home with their families whenever possible. The creation of a system that achieves this goal, however, has been difficult. Our current system is “chronically underfunded and under-resourced,” says Eyal Cohen, a pediatrician who specializes in the care of children with medically complex conditions.

An influx of funds into the system is badly needed and can bring about change. For example, the Ontario government recently claimed that the 2014 waitlists for Special Services at Home was eliminated.  Similarly, according to the Auditor General report, from 2008 to 2012 there was a 20% increase in funding for IBI programs. Thus, although the IBI spots remained stable at 1,400, these programs were able to provide service to 14% more children. The Auditor General hypothesized that this may have been accomplished through increased efficiency by agencies offering these programs, but also through shorter IBI treatment programs or earlier discharge of patients from the program.

But additional funding alone is not enough. The system itself must be re-organized in order to make it more inclusive and less complex.

Over the past several years, the MCYS has become increasing aware of the problems that plague the current system, says Cheryl Farrugia, executive director of Aptus. As a result, the MCYS has begun working towards creating a single entry point for each region’s developmental services.  Although this program’s development is in its infancy, Szamatri sees this as a positive step. It will hopefully increase accountability for individual agencies and be easier for families to navigate. It may also encourage more collaboration between different treatment centres. Other smaller initiatives aimed at increasing service accessibility and transparency have also been implemented, such as the creation of an appeal process for families denied IBI.

Despites these initiatives, other changes are needed. The system is quite fragmented with very little intra-ministry collaboration, says Sumsion. For example, the MCYS is tasked with providing residential placements for children with developmental delay, while funding for these placements is provided by the Ministry of Community Services. As a recent Auditor General report states, this creates confusion around who is ultimately accountable for these programs.

Ultimately, the need to fully support these families may also require consideration of non-traditional supports for families, explains David McConnell, director of the Family and Disability Studies Initiative at the University of Alberta. Programs such as flexible work hours for parents or more inclusive daycares, would provide families with the needed respite care, while also helping to alleviate the social isolation and financial hardship these families face.

Though Linda Cheung’s family is appreciative of the services they have received, the road to receiving these services has not always been easy. As they look towards the future, her family continues to apply for new services and are hopeful that their children will be able to access these new opportunities and continue to learn and grow.