Usually ACT takes the opportunity in the News Round Up to look at the all the positive events that happened during April Autism Awareness Month. We can’t do that this year. Angie and Robert Robinson died on April 2, 2014, World Autism Awareness Day in Prince Rupert. It was several weeks before their family bravely brought their tragedy to public attention. One of the most terrible aspects of the deaths of Angie and her son Robert Robinson, was that she was looking for help and no one in authority offered her sufficient hope to carry on. There was no residential placement available for 16 year old Robert locally and his mother was exhausted.
Robert’s uncle described him as over six foot and at least 250 pounds and functioning as a very young child. His mother was less than half Robert’s weight and unable to control him when he became aggressive. Robert no longer went to school and had no language to express himself. If the reports are accurate, the response of the local hospital, after Robert put his head through a car windshield at the end of March, was to send them home, giving Angie, a single-parent, 400 Ativan to keep Robert sedated, thus providing a desperate parent the means to end what must have appeared to her a futile struggle to find him real help.
We will not know the exact circumstances of this tragedy until the Representative for Children and Youth, Mary Ellen Turpel-Lafond carries out her inquiry, and that only after the coroner’s report. British Columbians have great respect for Ms. Turpel-Lafond, this is one of the few glimmers of hope in this horrific situation.
The deaths of Angie and Robert Robinson forces the B.C. autism community, and the developmental disabilities community more broadly, to acknowledge that in 2014 we still do not have a system to provide timely, appropriate supports to vulnerable families in crisis, let alone have a preventative system to avoid placing families caring for children with special needs at risk.
B.C. lacks a Crisis Response System for Families with Children with Special Needs
The shameful reality is that while we have many committed social workers, teachers, clinicians and medical specialists, we do not have a systemic approach to supporting our most vulnerable citizens: those with severe developmental disabilities, with or without autism, who cannot advocate for themselves and whose parents are exhausted by decades of begging for support. The Autism Funding Program was never meant to address these profound challenges.
Social workers in smaller communities are often responsible for children with special needs as well dealing with child protection issues – with unmanageable caseloads. For as long as I can remember, families of children with special needs have found it difficult to be heard through the filter of child protection. When resources are tight, and they usually are, it is not surprising that families who appear to be devoting themselves to their high-needs children are not seen to be as great a risk to their children as those who are known to be abusive.
One of the ironies I see in the current situation is that twenty years ago I was one of hundreds of families in B.C. begging for therapeutic programs for my son with autism, then just four years old, but already capable of bringing our family to the brink of despair. Back in the dark ages of the 1990’s, the idea that children with autism could get better with treatment was dismissed as delusional by the B.C. government. All that was available after years of wait lists was a smattering of often second rate behavior support and the prospect, if child or siblings were at risk, of a group home where the child could be cared for, usually by untrained workers. Today there are fewer residential options available for families in crisis; autism funding is treated as a panacea for all the health, education and therapeutic needs of the child.
We have to get a grip on the reality as autism is a public health crisis in Canada. Today 1 in 76 children in B.C. receives autism funding. Each of these child has a name and can be tracked. The government of B.C. acknowledged, after a court case, that autism does respond to therapeutic intervention. ACT is contracted to manage the Registry of Autism Service Providers to ensure that funding is spent on professionals with qualifications. In the last decade, the RASP has grown from just over a hundred providers to 525, but we are still not keeping up with the demand from families because we have the rapid escalation in the number of children being diagnosed.
Focusing on Vulnerable Families with Few Resources
What is clear from the service model we have in B.C., is that families in communities like Prince Rupert are woefully under served by a private delivery system which is not designed to serve smaller communities or high needs families. It is not equitable to provide the same level of funding to a parent in an isolated community on a low income as is received by a well educated, two parent family in a major urban centre.
The reality is that most children with ASD will do relatively well, some extremely well, even with the limited funding available ($22,000 is insufficient to run a quality program) because their families are able to engage in their child’s program, have access to their own financial resources and live in well-resourced communities.
We could and must do better for all families, but families who are not able to engage in intervention for their children for a variety of reasons need special attention. It must be acknowledged that even able families struggle because it is very tough to run an intervention program for a child with autism, even with unlimited funds. As a society, we should be prepared to accept that at least five to ten percent of children with ASD will be high needs, because in addition to autism they have other conditions which may include significant mental handicaps and/or mental health issues or their families may be struggling with additional barriers.
A Vicious Cycle
Often the families who are vulnerable to begin with are those who are the least able to respond to the extreme challenges of autism and are unable to offer their child early intervention in B.C.’s self-directed model. They include single parent families; those who live in isolated communities, including on reserves; those who live in poverty and those with parents impacted by mental illness. Immigrants and aboriginal communities are particularly challenged to provide proper intervention for their children and often experience a late diagnosis and a lack of timely access to those who can help them. Indeed those who have the means access private diagnosis in B.C. and access funding immediately. Those without resources languish on waiting lists and get no support in the meantime. This two tier system of access to diagnosis and treatment is profoundly discriminatory by any measure.
When families have no right to adequate services for their children, then preventable tragedies will happen. There are those, among them parents of children with autism, who see Robert Robinson’s death simply as murder by an uncaring parent. For those of us, however, whose children are too old to have qualified for early intervention, who can remember what it was like to be exhausted and lose hope, Angie Robinson’s actions are not unfathomable. We can easily imagine what it was like for this mother, living in a community where specialized services for her son were almost non-existent. Where he wasn’t even welcomed at school.
Angie Robinson could not carry on and according to her family she had been given no hope that her son would be well looked after without her. Many parents of children with disabilities are terrified who will look after their vulnerable children after they are dead. A poignant reminder is in the video by John Carinha and the Row4Autism Campaign. He reminds us that for so many parents of children with autism, if they were asked, “If I could grant you one wish what would it be? They will always respond to you, that it will be to live just one more day than their son or daughter.” See his video online.
What is to be Done?
So what can be done? How can we as British Columbians concerned about our most vulnerable families, impacted by autism and/or developmental disabilities, work together to effect meaningful change? Below are some suggestions. I know there are many other B.C. parents and professionals who have thought long and hard about these issues. You are welcome to send your insights directly to me. Your confidentiality will be protected, if you request it.
Our hope is that ACT, with your support, can organize these insights to share with the Mary Ellen Turpel-Lafond, the Representative for Children and Youth, as part of the process that she will be engaging in.
We all must continue to work on better systems of diagnosis and intervention – as prevention is far better than crisis intervention. So with the focus on averting crisis, here are a few initial suggestions that may spark others:
- The Ministries of Children and Family Development, Health, Education and Social Development collaborate to create and fund a provincial-level emergency team to be composed of medical, behavior, and education specialists, including a senior social worker, available to smaller communities when local teams cannot provide support. The existence of this team should be widely known and it should be easy to contact by concerned families, community professionals or agencies like ACT or Inclusion BC.
- When a high needs child is withdrawn from school and is left in the care of his or her parent, the Ministry of Education (MOE) should require the school to alert the local school district and the B.C. Ministries of Education, as well as Ministry of Children and Family Development (MCFD), and identify that the education system has not met the child’s needs. A consultant from the MOE’s Provincial Outreach Program for Autism and Related Disorders, based outside the district, should be brought in on an emergency consult to write a report focusing on solutions binding to the school and district.
- MCFD/MOH/MSD to collaborate on a highly trained provincial network of residential resources equipped to provide short-term stabilization of children and adults with autism and/or developmental disabilities. The health needs of the individual must be acknowledged first with intervention focused on a behavioral approach with the goal of reintegrating children and adults into their local communities with trained support able to access specialized teams.
- Organizations like ACT – Autism Community Training and Inclusion BC to increase our profile as resources to parents in crisis who need access to emergency services. While ACT doesn’t have sufficient resources to run a 24 hour crisis-intervention hotline, we are committed to helping families and the professionals who support them, understand who they can turn to when in crisis.
Again, these are only a few ideas. There are many committed professionals throughout B.C. working for government, as private practitioners and at our universities and colleges. Many of them are also parents of children and adults with special needs. I know from my discussions with many people over the last few weeks, we are all deeply disturbed by the deaths of Angie and Robert Robinson. ACT would welcome the opportunity to work with other individuals and agencies to contribute to the inquiry, which the Representative for Children and Youth, Mary Ellen Turpel-Lafond, is considering.
Please feel free to email me at firstname.lastname@example.org with your insights and suggestions to prepare for presentation to the inquiry. Please indicate whether you wish to remain anonymous or wish to be quoted directly.
ACT – Autism Community Training