Navigating health care can be tough. It can be even more challenging for kids with disabilities and complex medical care needs and their families. The care ecosystem for kids and youth we see at Holland Bloorview is complex and includes therapy and rehabilitation services, home care and in-school supports, care in family doctor and pediatrician’s offices, and often in acute care hospitals.
Dr. Eric Hoskins, the Minister of Health and Long-Term Care, released a consultation paper in late December that proposes changes in the governance and delivery of health care services to improve care coordination and access for people across the province. At its core, Patients First: A proposal to Strengthen Patient-Centred Health Care in Ontario sets out a vision to evolve the way care is provided to put “patients” at the heart of care networks and improve their ability to find the care they need, when they need it.
How does the Government want to achieve these goals?
Currently, 14 Local Health Integration Networks (LHINs) across the province have oversight for local acute care, long-term care, community services, and mental health and addiction services. The Ministry of Health and Long-Term Care is proposing that LHINs also oversee other parts of the continuum of care, including:
- Primary care. These are the people we might more typically think of as family doctors and (in some cases) the teams they work in. The aim is to continue to improve access to primary care and ensure primary care providers can effectively connect their patients to other parts of the health sector. Currently, other than the Ministry, no organization oversees primary care.
- Community and home care. Community Care Access Centres (CCACs) manage the delivery of home and community care in Ontario (including in schools) and are currently accountable to the LHINs. Under the proposal, LHINs would gain direct responsibility for service management and delivery of home and community care. CCAC boards would no longer exist.
- Public health units. The LHINs would take over accountability of public health units and the allocation of Ministry funding and work closely with the Medical Officers of Health in each area. Public health services would still be managed at the municipal level.
Also under the plan, smaller sub-regions within each of the LHINs would be created and would lead the integration of community and home care with primary care. For example, within the Toronto Central LHIN there are five sub-LHIN regions proposed.
What I’ve heard at consultations
The Ministry asked patients, families, providers and care organizations to provide feedback about the proposal in January and February. In the various consultations I’ve attended and been briefed on, I’ve heard excitement about a vision for better integration across the continuum of care (hospital, doctors offices, home, community). However, I’ve also heard concerns about how provincial programs and specialty programs including pediatrics and rehabilitation fit into this vision, whether there will be new dollars associated with this transformation and how the critical issue of caregiver burnout will be addressed. I’ve also heard questions about the capacity of the LHINs to take on new care delivery responsibilities, where health equity and social determinants of health (e.g. poverty) are being accounted for and how successes are going to be maintained and strengthened.
Families at Holland Bloorview consistently tell us that kids needs do not neatly fit into government ministry borders, they don’t want their kids to be seen first and foremost as “patients” and they need better coordination and navigation to help access the array of existing services. They have also asked how Patients First and the work underway under the Special Needs Strategy will come together to make real improvements for kids with disabilities and their families.
What do kids and their families need from Patients First?
It would be hard to disagree with the overall and high level vision the Ministry has set out in Patients First: better service integration and coordination and putting patients at the centre of care. I commend Minister Hoskins and his team for their commitment to transforming the experience of care and, ultimately, the outcomes of care for all Ontarians.
What are missing in the proposal are kids and families. Quality care from pre-birth throughout childhood is critical to ensuring our kids and youth become healthy adults with the greatest opportunity, best lives and widest societal participation.
We know intuitively as parents and caregivers, and based on evidence as health care providers, that children are not mini-adults. The Government needs to thoughtfully plan to address the unique care needs of kids and their caregivers. Needs that include school supports, mental health care, the coordination between primary care providers and specialists, specialized technology and equipment, seamless transitions to adult services and, in particular for kids with complex needs, support navigating and accessing therapies and services including those that aren’t available in local communities.
Holland Bloorview partnered with CHEO, McMaster Children’s Hospital, Sick Kids and Kingston General Hospital on a coordinated response to Patients First. We proposed that any visionary redesign to health services include a distinct approach for improving children’s health and development and that the Ministry draw on the extraordinary expertise in pediatrics available in this province to help develop a strategy that puts kids and families at the centre.
Holland Bloorview is here to help. Drawing on the insights and experiences of our young patients and their families, specialized research conducted by scientists in the Bloorview Research Institute and clinical expertise, we look forward to informing improvements for kids and families to ensure the best experience and outcomes and optimal health and well-being for kids as they reach their full potential throughout their childhood and into adulthood.
What are your ideas for putting kids and families first in Ontario’s health care?
Julia
@hanigsberg
Julia Hanigsberg, President and CEO blog 
Hi Julia,
Who would have thought that decentralization would result in greater autonomy and better healthcare? For, did we not spend the last decade streamlining services to secure government funding and reduce cost? There is also no denying the fact that hospitals will have to absorb any start-up expenditures.
With this said, “If these new agencies or departments were willing to pool their resources and not squabble over one’s responsibility or jurisdiction, putting clients and families first, the proposed changes could work.”
And, yes, caring for children (as well as adults) with disabilities requires insight, careful planning, and a little more work. But, I swear, “It is no less worth it.” For, what we choose to say is, “Everyone matters!”
Thanks for writing.
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Thank you for commenting. – Julia
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