Advocacy for Transition of Care – For Those With Complex and Chronic Illnesses and Disorders

Good morning. My thanks to Owen Adams of Health and Policy Research for inviting me to participate in this morning’s session. Owen has asked me to discuss the topic of advocacy to address the challenges of effectively supporting and delivering medical care to children and young adults with complex and chronic illnesses as they transition into adulthood. It is a pleasure to be here for this purpose. In your exploratory work, let me emphasize that the time is ripe for the CMA into step in the circle of partners.

INTRODUCTORY NOTES

  • Growing up, the son of a minister, never did I think I’d be an advocate.
  • During my career as a reporter – when I would bring stories of other people’s struggles to audiences – I realized that I was in fact advocating. Giving a voice to people who wouldn’t otherwise be heard. Raising awareness of issues.
  • Advocating is in all of us. Each member of the Canadian Medical Association is committed to helping people be and feel better. You are advocates too.
  • What I do and how I have evolved as a senator; the Children’s Senator; with my own family; and, as a result of losing a son.
  • The various experiences we undergo, what we learn and who we meet along the way are building blocks.
  • My involvement in autism illustrates this:
    • Meeting a ‘lone protester on Parliament Hill’
    • Support of colleagues and the response of the social affairs committee to my insistence on a study about autism
    • The autism study and the public impact of “Pay Now or Pay Later”
    • Involvement with the autism community and the public call for the recommendations of the Senate report, especially a national ASD strategy

If we can have a Mental Health Commission, why not a National Commission on Autism?

Today’s session is an opportunity for all of us to learn from each other. It is a small step in the new atmosphere of collaboration we are witnessing all over the country as communities of interest, groups and governments are sharpening their look at how we support special needs people, not only children but young adults in transition and their families. Many initiatives are being launched and I applaud the CMA as it explores the ways to participate, in policy-making, in professional development, in knowledge sharing and best practices at the national and local levels.

In mid-August I was part of the presenting group of stakeholders at the announcement in Toronto at the Centre for Addiction and Mental Health of the New Ontario Working Group to address mental health and autism in adults. Last week at the Geneva Centre 2014 Autism Symposium, Dr. Douglas Weir and Dr. Kevin Stoddart, the co-chairs of this working group facilitated a one day conference on these issues. We will ensure that the results of this exchange are shared with you. Also, I know there is physician research being done in

British Columbia and Nova Scotia on issues related to the transition of care for patients with ASD. The key issues are:

  • The cut-off of pediatric care for patients when they reach 18.
  • The necessity for them to transition to a new and often complicated system of services.
  • A different approach to care that cannot involve families as before, but instead must focus more on patients as adults.

Dr. Doug Weir, from the Ontario Working Group (who by the way is a former president of the Ontario Medical Association) describes the transition to adulthood of people with an ASD as being like “dropping off a cliff.”

For the average Canadian child, the age of 18 represents a rite of passage toward independence, self-sufficiency and normal adulthood. But for children with multiple and/or complex needs, these changes present very serious risks and threats:

  • The health and wellbeing of human beings are at stake.
  • The frustrations encountered within a system that is not currently structured to ensure a smooth transition.
  • The fears and frustrations of patients and their families as they face the unknown and encounter new physicians who often lack the confidence and insight of their pediatricians and others who have cared for them for many years.

Another example of emerging collaborations is the very recent release of the Ontario Government Special Needs Strategy and Guidelines for Coordinated Planning. It represents a family-centered approach for coordinated planning service. It is another example of people, groups and governments working together to provide what will hopefully become a seamless delivery of services.

The hard work, the advocacy of stakeholder groups, the experiences and the progress I witness everywhere I go, are among the main reasons I began working and still work to support people with autism and their families.

I am not an expert in any aspect of autism. I just do what I can to raise the profile of issues, and encourage and guide people on the workings of government and how to present their causes to our national decision-makers.

I am also a communicator and a connector. If I hear about a promising new treatment or program, I want to let others know about it. I want to get people thinking about possibilities. On the topic of advocacy, I know the CMA is already well positioned in important strategic ways – including lobbying, communications, government relations, political liaisons and social media. Your association has been clear about its stance on seniors’ care and your message will spread.

Keep doing it. I strongly encourage you to keep probing into the issues and extending your research and stakeholder networks.

I recently reread our Senate report on autism and was struck by its continuing relevance – and not just to autism. Many witnesses who provided testimony to us at that time said again and again that autism treatment requires the participation of a multi-disciplinary team. Medical practitioners like yourselves. Psychologists. Psychiatrists. Speech-language pathologists. Occupational therapists. Special education providers. These and other specialists, researchers, administrators. The list goes on. We all have a role to play.

We are all in this together.

You will only gain from creating ties and collaborating with care and service providers who, like you, assist people in managing their lives and the symptoms of their conditions. They are a promising source of guidance on your advocacy activities and messages, and might well be able to help you reach wider audiences.

It demonstrates commitment and willingness to cooperate and break down silos of expertise to work with individuals and organizations that, though different, are like-minded.

In preparation for my speech this morning, I consulted with a number of key members of the Canadian autism community. On the topic of collaborations with the medical community, I spoke with Sally Ginter, who is the CEO and President of Kerry’s Place Autism Services located in Aurora, Ontario. Kerry’s Place serves more than 8, 000 children, youth and adults with an ASD and their families each year.

Holistic. It is a word I hear repeatedly when talking with people in Canada’s autism community, including physicians. Sally, for instance, explained what the holistic approach means in terms of daily activities at Kerry’s Place: Service providers do not see particular behaviours in their clients. They aim to understand what their clients are communicating through their behavior. In other words, they take into account the full person – from their physical wellbeing and recent experiences, to mental health. This perspective fosters understanding of what individuals need to best function and flourish.

According to the reports I have read by CMA members on the transition of care, the experiences and behaviours of patients with complex and chronic illnesses and disorders in emergency rooms can be especially problematic. On top of being in pain or suffering some other discomfort, patients are frightened. The lights, bustle and constant noise tend to fuel their anxiety and undermine their ability to cope and communicate with attending physicians who know nothing about them.

Sally acknowledges that this particular situation can be extremely difficult, but there are many things that can be done to help clients and physicians. Kerry’s Place service providers sometimes accompany clients to emergency rooms, helping them and physicians alike feel more at ease. They will also go along with clients to doctor and dentist appointments, when appropriate. When they think it would be beneficial for their clients to go to a clinic or an office ahead of an appointment, they will do so.

These are among the services available at Kerry’s Place that could potentially be incorporated as models or elements of your own policies and procedures.

There is always more to know about the symptoms of conditions such as autism. How they impact the health of patients and their lives as well. Those who work closely and regularly with autistic people often say that we need to look past the autism. To see the human being.

Among the challenges your members highlight in regard to managing the transition of care, the burden of referrals is one that stands out. It makes me wonder if there might be a way to render some reduction of this burden from a holistic approach. For instance, treating a patient with autism, as opposed to an autistic patient.

Laurie Mawlam of the Autism Canada Foundation is a long-time connection of mine who was one of the first people to help me realize the scope of symptoms experienced by people with autism. Gastro-intestinal sensitivities, for instance. And, quite apart from ASD symptoms, anyone can have allergies and other conditions – but I would be interested to know if physicians of patients with chronic illnesses and disorders sometimes refer them for conditions they could actually treat themselves. In addition to possibly reducing the work involved in seeking out specialists and providing them with sufficient background on patients, this would certainly protect patients from the undue stress of having to include a new, unknown physician in their medical team. The information I have on this is anecdotal, but it might be something your association could explore quantitatively.

Again on the topic of a holistic perspective, I recently spoke with Tom Collins, president of the board of directors of the Sinneave Family Foundation. The foundation has created a remarkable facility called the Ability Hub in Calgary, which focuses on improving the quality of life and level of independence for adolescents and adults with an ASD. Tom talked to me about a program to study and build awareness of the fact that families of children with an ASD have comparatively higher rates of cancers, high blood pressure and other life-threatening health concerns. Given the stress of dealing with difficult symptoms and complicated systems for accessing care for their children, it is no wonder there are negative health effects on family members. This is definitely something to find out about and would underscore advocacy efforts to improve transitions of care and to better engage the federal government in national health issues.

As you might know, the Canadian Autism Spectrum Disorder Alliance (CASDA) has a substantial membership of federal and provincial autism societies and funding, research, advocacy and service organizations, as well as some very dedicated and influential individuals. It is an excellent organization for the CMA to connect with. This past spring, on World Autism Awareness Day, CASDA launched a national needs assessment survey with the goal of gathering input from a sample of 5,000 Canadians. If you missed the opportunity to participate either as respondents or by way of proposing issue areas, that is unfortunate – but there will nonetheless be a huge opportunity to better understand the needs of your patients once the results are compiled.

A drop-off point. The biggest albatross. A bridge to nowhere. Representatives of three different autism service organizations describing the challenges of transition in three different ways.

Clearly, your goal to advocate for changes to ensure a better transition for patients with autism and other chronic illnesses and disorders is relevant and very much in the public interest.

Service changes. New funding programs specifically devoted to transition. Unique collaborations engaging schools, families and funding bodies.

My friend Dave Mickelson of the Society for the Treatment of Autism in Calgary lends meaningful and often unique insight to discussions about next steps. He considers transition an integral factor in whether individuals with autism are able to ultimately realize what we want most for them. What they need most – and that is independence and the potential to undergo training and develop life skills.

You, doctors, are influencers in this necessary process. Along with other significant caregivers in these individuals’ lives, you have an important, determining role to play. A role that is ahead of anything a provincial or federal government is prepared to do at this point. According to Dave, governments talk about sustainability of our public health services, but they have no idea what’s coming down the pipe. We have to get ready years ahead. This is as true for society as it is for every individual facing major transitions.

Because of where they live – for instance, in a rural location – many children with autism do not have a pediatrician. General practitioners provide the diagnoses and ongoing care they require. This is not an entirely bad thing in some cases, because the children have a continuity of care throughout the transition to adulthood they wouldn’t have with a pediatrician. It would be interesting and beneficial if all children with autism, even those with a pediatrician, could have some type of long-term contact with a general practitioner. To enable continuity of care. To ensure a relationship that will grow and be maintained for many years, regardless of the patient’s age.

Whatever ongoing care arrangements you consider as part of your advocacy activities, a key component has to be communications between doctors and their patients. As Dave says, given the role of doctors in their patients’ lives, they should initiate discussions with them about their plans – well ahead of time. Years before. “Can I help?” “What are your plans?”

Physicians are ideally positioned to talk with patients about future needs, like community health options, housing, nutrition, and psychological considerations during periods of change and for the long term.

And it makes sense too to think well beyond this first major transition. To prepare them for other changes to come. Like the transition to elderhood, after then parents have died.

I have mentioned the Senate social affairs committee’s autism report and main recommendation that the federal government take the lead in the creation of a national strategy. In your work to support seniors and as you explore models for removing the difficulties associated with special needs children transitioning to adulthood, you have no doubt run up against the obstacles of jurisdiction – where the mandate of one ministry prevents it from coordinating and cooperating with another ministry. Where some matters are within federal jurisdiction and others provincial.

Strategies can be the most promising, pragmatic way to handle complicated situations that cannot otherwise be managed. They provide guidance on how various ministries and disciplines can work together – effectively. With consistency and awareness of what all the players are doing.

For many years, as the rate of autism rises and rises – and is now within the range of a public health crisis – the autism community has carried the responsibility of helping those impacted by the disorder.

As a result, that community has become stronger, and increasingly capable and determined. In terms of advocacy, the attitude has had to be, ‘why wait for government to introduce reforms when we already know what the needs are?’

This morning, I have highlighted issues, experiences and practices that relate specifically to autism but that are equally relevant and, I hope, meaningful to you in your exploration of transition of care. A national ASD strategy represents the ultimate goal of autism advocacy. Those who know regard it as the only moral response to the autism crisis.

The Canadian Medical Association is a strong and widely respected force in our country. Given the linkages between the public health issues related to autism and to other chronic, complex disorders and illnesses, there have to be ways we can contribute to one another’s objectives and social priorities. Members of your association were among the witnesses whose expertise and compassion are recorded in the observations and are traceable in the recommendations of the Senate report, “Pay Now or Pay Later.”

I am often asked if I think the federal government will ever rise to its responsibilities and take the lead on an ASD strategy. My answer will lead to advice that I will close with and I encourage you to take to heart.

The reality is that there are two realities. The federal government has not yet taken the action it should. At the same time, it has introduced initiatives that will inevitably lead to a national strategy.

If we are going to have a strategy, for example, we first need data and information to be used for standards, baseline evidence and evaluation. Health Canada has allocated financial and human resources to autism surveillance – and will we soon be fully equipped to measure and plan.

The federal government also introduced a registered disability savings plan a few years back, enabling families to save for the future needs of their children with disabilities.
We now also have an Autism Centre of Excellence at York University.

These are not isolated contributions by our federal government.

They are all incremental steps.

At the end of March 2015, we will be sponsoring a huge autism event on Parliament Hill: The Autism Leadership Summit. This event will gather all of the players in this field and I do hope to see you there.

Progress is not always obvious and does not always come as we plan for it. To recognize signs of it, you have to be receptive. Keep your eyes open and your approach unyielding. Feel right in what you are pursuing and encourage others.

Thank you once again for the invitation to take part in this important session. Advocacy begins with and is always about building ties and working with others. I am honoured to be part of the CMA’s exploratory process and look forward to supporting your work further – and, one day, witnessing its positive impact on our society and on people’s lives. We are all in this together.