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Care Coordination and Funding of Pediatric Cerebral Palsy in Canada — Project Report

December 2020

Abbreviations

Abbreviations Full Name
AB Alberta
BC British Columbia
CP cerebral palsy
CSHCN children and youth with special health care needs
GMFCS Gross Motor Function Classification System
LPN licensed practical nurse
MB Manitoba
NL Newfoundland and Labrador
NP nurse practitioner
NS Nova Scotia
ON Ontario
OT occupational therapist
PT physiotherapist
RN Registered Nurse
SK Saskatchewan
SLP speech language pathologist
SW social worker

Summary

  • The objective of this Environmental Scan was to summarize the current state of care coordination and funding for children with cerebral palsy in Canada.
  • The Environmental Scan was informed by two surveys (a care coordination survey and a funding survey) and by an existing literature review conducted by an external stakeholder. There was a 70% response rate for both surveys.
  • Nine unique organizations from six provinces including British Columbia (two organizations), Alberta (one organization), Manitoba (one organization), Saskatchewan (one organization), Ontario (three organizations), and Newfoundland and Labrador (one organization) provided data that informed this Environmental Scan.
  • Four out of seven organizations who responded to the care coordination survey reported offering a formal care coordination program for children with cerebral palsy. These formal programs each had their own eligibility criteria for recipients, who most likely exited the program once they reached adulthood. Three programs were identified as informal but provided similar activities and services to the formal programs.
  • Individuals directing formal care coordination programs were often called “coordinators,” including Clinical Nurse Coordinator, Complex Care Coordinator, Service Coordinator, or Clinical Service Lead. Backgrounds for these positions include nursing, social work, and occupational therapy.
  • Programs were typically referred to as pediatric care coordination or pediatric rehabilitation programs and included activities such as needs assessments, shared treatment plans, goal setting, coordinating appointments, identifying community resources and financial support, and providing patient and family education.
  • Travelling or outreach clinics were provided by all participating care coordination units — as well as small, rural, remote, and isolated areas where geographic location may be a barrier to accessing care programs — in order to reach priority populations and medically complex children.
  • Providers of care coordination received a mix of funding from public, private, charity, and out-of-pocket sources for the delivery of services and resources.
  • Perceived gaps in funding were reported by multiple respondents, including gaps in funding for mental health, psychosocial assessments, rehabilitation services, social work, support staff, equipment, and transportation for children with cerebral palsy.

Context

Cerebral palsy (CP) is considered a group of neurological disorders involving permanent motor dysfunction that affects muscle tone, posture, and/or movement as a result of permanent and irreversible damage to the developing fetal or infantile brain.1 The overall prevalence of CP is approximately 2 per 1,000 live births1 and affects approximately 1 in 400 Canadians.2 Although the signs and symptoms of CP are unique to each individual, typical symptoms include poor coordination, stiff or weak muscles, and tremors, as well as issues with sensation, vision, hearing, swallowing, and verbal communication.3 Diagnosis is based on the child’s development over time; CP is typically diagnosed between the ages of 12 to 24 months; however, earlier diagnosis is increasingly common.4 Treatment and therapy are focused on maximizing functional independence and participation in daily activities, while minimizing the extent of disability.5 Children with CP often have complex health care needs that may need to be managed by a variety of health care professionals.6 For this reason, caring for children with CP can be physically and psychologically demanding for parents and caregivers who must navigate the health care system and communicate with multiple providers across different settings and systems to obtain the services and support that they need.7 Care coordination has been identified as a viable solution to alleviate stress, financial burden, and to identify and meet the needs of families of children with CP to improve medical care.8-10Optimal care has been reported to involve multiple components including: a patient- and family-centred approach to goal setting; multidisciplinary care with both virtual and face-to-face communication with providers; coordinated appointments with different multidisciplinary providers together at the same visit; development of a shared treatment plan involving health care providers, caregivers, and community-based supports such as teachers, and therapists; and periodic or ongoing re-evaluation of goals to allow for necessary changes to the care plan.5

The purpose of this Environmental Scan was to identify how care coordination services are used and funded across the country, as there is lack of clarity as to what care coordination services and resources exist (and how they compare to evidence-based best practices).

Objectives

This report summarizes information obtained through a literature search and two surveys of key organizations across Canada. The key objectives of this Environmental Scan are, as follows:

  • to determine the current state of care coordination services and resources across Canada for children with CP and contrast this to evidence-based best practices, where possible
  • to determine the current state of funding for care coordination services and resources across Canada for children with CP and contrast this to evidence-based best practices, where possible.

This Environmental Scan does not include an assessment of the clinical or cost-effectiveness of care coordination or funding services for children with CP. Conclusions or recommendations about the value or place in therapy of care coordination services for CP therapy are outside of the scope of this report

Methods

The findings of this Environmental Scan are based on a literature review (Literature review: pediatric care coordination for children with Cerebral Palsy — updated, Sunny Hill Health Centre at BC’s Children’s Hospital, 2020: internal document, Appendix 1) and responses to two surveys distributed to contacts in jurisdictions across Canada that provide care to children with CP. In consultation with external stakeholders and CADTH Liaison Officers, potential survey respondents were approached to gauge interest in the project. Ten people working in eligible organizations expressed interest, representing six provinces including Alberta (AB), British Columbia (BC [n = 2]), Manitoba (MB), Newfoundland and Labrador (NL), Ontario (ON [n = 4]), and Saskatchewan (SK). Responses were not received from contacts in Nova Scotia, Quebec, or from additional contacts from ON. Identified potential respondents were administrators of their organization’s programs or services that support care of children with CP.

Literature Review

A literature review conducted by a CADTH external stakeholder (Sunny Hill Health Centre at BC’s Children’s Hospital, Appendix 1) was used to inform the project plan for the Environmental Scan, including the survey components and questions. The literature review aimed to identify, review, and compile published evidence on care coordination concepts, models, and their components for children with CP or other relevant populations (Sunny Hill Health Centre at BC’s Children’s Hospital, Appendix 1).

Specifically, the research questions for the literature review were (Sunny Hill Health Centre at BC’s Children’s Hospital, Appendix 1):

  1. What are current or emerging best practices or standards to ensure high-quality care coordination in practice for children with CP? 
  2. What comparable pediatric care coordination models have been implemented? How do their key features of setting, care coordination providers, and program structure vary? 
  3. If an evaluation has been conducted on relevant pediatric care coordination models, what is their effectiveness on family goals, child, and caregiver’s health outcomes? What lessons can we draw from for children with CP? 

Given the quality, relevance, and timeliness of this literature review, CADTH did not conduct an independent literature review, instead using information from the already identified literature review to inform this scan. The literature search methods were reviewed by the CADTH Research Information Specialist team. Appendix 1 presents the full literature review (Sunny Hill Health Centre at BC’s Children’s Hospital, Appendix 1.

Survey Development and Response

Two surveys were developed to address the two objectives for this scan: one to assess the state of care coordination for children with CP, the other to assess the funding of services and resources for children with CP. The surveys were developed after the completion of the literature review and the results from the literature review were used to inform question development. Draft questionnaires were reviewed by the CADTH team and by a working group consisting of health care professionals and families of children with CP. Edits were made accordingly and once questions were finalized the questionnaire was uploaded to the Survey Monkey platform and sent electronically for pilot testing by external stakeholders and by independent CADTH researchers unrelated to the current project.

Following the completion of the pilot testing phase, questionnaires were electronically distributed to the 10 pre-identified respondents, as previously noted. Respondents were given four weeks to complete each survey, with follow-up reminders sent at 2 weeks post-survey invitation.

Respondents who gave their consent have their information represented in this report. Survey responses were excluded if more than 90% of survey questions were incomplete. Survey respondents were given the opportunity to validate their data following CADTH’s summary of the survey responses; at that time, some respondents clarified and added to data collected related to their program.

For the purposes of the survey, populations living in small, rural, remote, or isolated communities were defined using the following definitions from Statistics Canada:11

  • a small population centre is a community with 1,000 to 29,000 people
  • a rural area is any area outside a population centre (an area with a population of at least 1,000 and a density of 400 or more people per square kilometre)
  • a remote or isolated community is located more than four hours away from tertiary hospital services by ground transportation, with or without road access.

For the purposes of this survey, priority populations included (but not limited to) are First Nations, Inuit, and Métis; newcomers, and racial and ethic minorities; and English- or French-learning families.

Care Coordination Survey

The care coordination survey contained 48 questions, with a mix of multiple choice, matrix, yes/no, and open-ended questions. The questions focused on the evidence-based practices for CP care coordination identified in the external stakeholder’s literature review. The care coordination survey was sent to respondents on February 6, 2020.

Respondents were asked if they had a formal care coordination program based on the following definition by the Agency for Healthcare Research and Quality: care coordination is the “deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of health care services.”12

Respondents were asked several questions regarding the activities of their care coordination program (formal and informal), care provider team, program structure, and care coordination activities for rural, remote, and priority populations. Respondents were also asked about the specific formal care coordination activities provided by their site with regard to the following five categories identified through the literature review (Sunny Hill Health Centre at BC’s Children’s Hospital, Appendix 1: 1) Coordination of Care Needs; 2) Planning and Assessment; 3) Information and Specialist Support; 4) Practical Support; and 5) Mental, Emotional, and Social Support. Appendix 2 details the full list of questions asked in the survey.

Funding Survey

The funding survey contained 22 questions, with a mix of multiple choice, matrix, yes/no, and open-ended questions. The funding survey was sent to respondents on March 16, 2020. Appendix 2 details the full list of questions asked in the survey.

Findings

The following findings are based on responses received and collected as of May, 2020, and on the literature review results (Sunny Hill Health Centre at BC’s Children’s Hospital, Appendix 1). An additional response to the funding survey was received in September 2020 as a result of the stakeholder feedback process and is appropriately included and reported here. Nine organizations participated in one of the two surveys, with five respondents participating in both the care coordination and funding surveys. The results are summarized and presented according to each objective.

Objective 1: Current State of Care Coordination Services Across Canada

There is a lack of consensus on what defines “care coordination” and what activities broadly constitute care coordination. Despite this inconsistency, the field of care coordination is rapidly evolving and literature appears to show support for the concept in improving pediatric care. Effective care coordination may include patient- and family-centred care, effective communication between different providers and patients, accountability and clarity of roles with one central coordinator, a co-developed shared plan that includes participation of the patient and family, and ongoing evaluation of the care plan. More information on these concepts can be found in Appendix 1.

The following section is an overview of some of the various activities performed in select formal and informal care coordination programs in Canada, the providers involved in care coordination for these programs, specific challenges and strategies in rural and remote care, and care coordination in priority populations.

Care Coordination Survey Results

Seven responses were received out of 10 sent surveys for the care coordination survey (70%). Responses were received from one organization each in AB, BC, MB, NL, SK, and two organizations in ON. For clarity, the two different ON sites will be distinguished as ON Site 1 and ON Site 2.

Appendix 3 provides more detailed results of the care coordination surveys in tabular form.

Activities of Care Coordination Programs
Formal Care Coordination Programs

Four of the seven organizations that participated in the survey (BC, AB, MB, and NL) reported that they provide a formal care coordination service to pediatric patients with medical complexities such as CP. Three of these four organizations specified that they provided care coordination specifically for children with CP.

Respondents were also asked to describe the definition of care coordination used to design the activities provided by their organization. Respondents from BC and AB both followed the definition used from the Agency for Healthcare Research and Quality (the same definition that guided the development of the survey), while respondents from MB and NL noted that they had developed their own definitions. The respondents from MB and NL noted that their definitions also build on the similar theme of working with the patient and family to facilitate appropriate care. Direct responses are listed in Appendix 3.

Overall, the four formal programs shared many components, including identifying resources close to patients’ homes, identifying support resources, conducting needs assessments, gathering information from the patient and family, goal setting, co-developing a care plan, educating patients and explaining navigation of the health system, and coordinating mental health services.

Appendix 3, Table 1 provides more details on what components are present in the identified formal programs.

The respondent from NL reported providing all the activities related to care coordination identified in the survey, whereas the respondents from BC and MB reported providing all but one identified activity. The NL respondent described that care coordination was delivered via a weekly CP clinic where multiple health care providers would meet to discuss needs and action items such as consultations and referrals. The respondent added that a social assistance worker was available to offer practical as well as financial support by facilitating application processes for various program funding; they have also facilitated a transition group for patients transferring to adult services.

From the potential services identified, the organization from BC does not provide educational, social services, or community support beyond the realm of health care but noted it did offer additional services such as referrals to community supports, advocacy support, and quality improvement projects to improve access and quality of care. In BC, the respondent also described activities related to the surveillance of emerging needs, providing follow-up assessments and providing a road map of the care pathway, as well as developing new care pathways to anticipate future needs. The formal program in BC also carries out additional activities such as collaborating with community partners, sharing information and resources, and developing tools to ensure the continuity of care; this was reportedly completed via participation in committees, working groups, online course development, and conference presentations.

The respondent from MB does not manage acute situations directly, but reported that MB has a specific complex care program carried out by a nurse clinician for children, including those with CP, who have complex care needs, (typically level IV or V on the Gross Motor Function Classification System [GMFCS]). The organization from AB reported providing a comprehensive program addressing planning and assessment (surveillance, follow-up, and addressing urgent needs, in addition to planning treatment and scheduling regular appointments), information and specialist support, connecting patients with community resources and activities, and collaborating with social work and community providers to identify and facilitate the needs of patients. Fewer activities are provided related to coordination of care needs, practical support, and mental, emotional or social support. Additional comments were provided by respondents for each of the five categories, summarized in Table 2.

Eligibility Criteria

The literature noted that components of a care coordination program — such as eligibility — can vary depending on who is defining the service and how it is defined.13 Mirroring this, the survey found each of the four formal programs had their own set of eligibility criteria, as described by respondents. This typically included a diagnosis from a physician or nurse practitioner (NP) and referral — either through a physician, NP, hospital, or in some cases via self-referral. For example, the NL respondent reported that families of children with CP are eligible to apply for care coordination provided they have appropriate medical documentation (e.g., appropriate diagnosis) and referral from a physician or NP. The respondent in MB described a central intake line at Manitoba Possible that could be used by families of children with a diagnosis of CP to enroll in the care coordination services themselves. The MB respondent also mentioned that, while there is no specific medical clinic for children with CP in MB, there is a care pathway to guide all caregivers to make appropriate referrals for clinical care and support. Certain organizations described more specific eligibility criteria beyond a diagnosis and referral. In AB, it was reported that a child with CP would be eligible for care coordination if they require any of the following:

  • screening for associated impairments and functional limitations
  • surveillance of musculoskeletal complications
  • assessment for adaptive equipment
  • planning of goal-focused therapy
  • tone management
  • orthopedic management in collaboration with orthopedic surgeons
  • child and family support
  • monitoring outcomes associated with specialty treatments.

The BC respondent reported that children, including those with CP, are eligible for care coordination if they require a referral to three or more neuromotor clinics or if they require clinic support as well as community support such as at home or child day programs. In BC, children are selected into the program via a registered nurse (RN), who is responsible for screening patient files for potential inclusion. Patient’s files are subsequently referred to a multidisciplinary complex intake review team that then conducts an initial needs assessment.   

Case Load

Three out of four of the respondents who identified having a formal care coordination program reported the approximate case load of their program. At the time of the survey, approximately 800 to 1,000 children, including those with CP, were reported to be accessing the care coordination site in AB, approximately 200 children with CP were reported to be accessing the care coordination site in NL, and approximately 20 children with various conditions including CP were participating in care coordination at the BC site.

Exit Criteria

Respondents were also asked if there was a set of “exit” criteria to determine when a child with CP no longer receives care coordination services. Overall, respondents stated that children with CP “exit” their program when the child no longer requires multidisciplinary follow-up; if they moved out of the province or country; and most commonly, when they turned 18 years of age and require transfer to adult services. However, the BC respondent reported that children with CP may continue within the care coordination program up to the age of 19 and the MB respondent reported that children may continue up to the age of 21 if they are still attending high school.

Evaluation of Care Coordination

According to published literature, a successful care coordination program includes the following key indicators: a patient- and family-centred care coordination service, increased child and family satisfaction of health care services received, increased patient family’s knowledge and skills in caregiving and advocacy, decreased caregiver stress and isolation through streamlining appointments and saving money and time, obtaining the appropriate services and supports closer to home, and facilitating the appropriate services and supports to meet family goals and needs.12

With respect to formal or informal evaluation of their care coordination programs, two of the four respondents reported that their programs were evaluated. Both respondents were asked for more details regarding the process of evaluation and key outcome measures. The respondent in BC described an informal evaluation process using outcomes related to improved chart flow, collaborative intake processes, and wait time between referral and first assessment to measure the impact of the quality and timeliness of care. According to the respondent, future evaluations will focus on patient outcomes. In NL, program success was reported to be measured through improvements in functional outcomes and progress of the child, as noted in their patient file. Success was also measured through the verbal satisfaction of patient families with care coordination and outreach services.

Informal Care Coordination

Three of the seven organizations that responded to the survey reported that they did not have a formal care coordination program. These three respondents (ON Site 1, ON Site 2, and SK) were also asked what activities of care coordination their site provided for children with CP and all three described providing the following activities:

  • identifying and acquiring resources close to the patient’s home
  • managing consultations, therapies, and/or appointments by coordinating interdisciplinary teams in primary and tertiary settings
  • initial needs assessment
  • gathering information from the patient and family
  • goal setting and co-developing a shared plan
  • patient education
  • explaining how to navigate the health system
  • identifying resources for support
  • encouraging communication via email, phone, or videoconference.

In addition to these services, the organization in SK reported providing regular meetings with the family, triaging emergency complaints, and advocating and coordinating mental health services support. None of the organizations reported managing acute situations directly, attending appointments with a patient and their family and interpreting medical information or test results, or coordinating educational or social support services beyond the realm of health care. However, ON Site 1 and ON Site 2 reported providing care coordination services for children with disabilities, not just CP, which included coordination of multiple service providers in the community.

Providers of Care Coordination

To minimize gaps and maximize consistency for families, the literature recommends the use of a “lead coordinator” for greater accountability and ownership of patient care.14 Despite a “care coordinator” role being seen as “crucial” in the literature, the literature also pointed to the duties of the care coordinator and the structure of the role varying due to the external environment the care occurs in, the internal environment of the health care system, the specific individual receiving care, and the nature of the interactions between care providers and patients.15 The literature reported that the majority of pediatric children with medical complexity and children and youth with special health care needs (CSHCN) groups (10 of 13) did not have a single care coordinator but used multidisciplinary groups with a nurse lead to coordinate care, as nurses and NPs have clinical skills, interpersonal skills, and educational requirements for the position. Team-based and multi-agency support is also recommended as best practice for the care of children with medically complex needs, such as those with CP.14

This was partially reflected in the survey results, with three of the four formal programs having a designated care coordination role and all of the identified informal programs leveraging other professionals involved in the care to perform overall coordination duties, frequently as a multidisciplinary team. All respondents additionally described providing counselling support and psychosocial assessments, either through a psychologist, social worker, or in some cases the care coordinator who referred individuals to appropriate services as needed. The literature described a consistent role for individuals tasked with care coordination — namely, to provide the coordination of care needs, planning and assessment, information and specialist support, and emotional and practical support.15 These roles were reflected in the survey questions, as respondents were asked about these specific care coordination activities and how they are integrated into the program.

Formal Programs

Three respondents with formal programs (AB, NL, and BC) reported that their service or program had a designated person in a care coordinator role. Two of these programs (AB and NL) noted using multidisciplinary teams led by a designated and consistent contact for pediatric patients with CP, who is also one of the nurses on the team. This is in line with reported models of care coordination in the literature that noted that the nurse on the team was a key driver of care coordination success given the profession’s core standard of patient-centred care coordination.16 This is also in line with the style of care coordination provided by some of the informal care programs and the CMC and CSHCN groups in the literature.

Administrators of formal care coordination programs were often referred to by respondents as “coordinators,” with titles including Clinical Nurse Coordinator, Complex Care Coordinator, Service Coordinator, Case Coordinator, or Clinical Service Lead, with professional backgrounds including nurse (RN, nurse manager, licensed practical nurse [LPN]), occupational therapist (OT), and social worker (SW). In NL, the leader of the multidisciplinary care coordination team was a nurse coordinator (a care coordinator with a nursing background) who facilitates care in both the tertiary and local settings through travelling clinics. In MB, while the respondent reported that there is not a designated person in the care coordinator role, they did specify that in MB, most children with CP have an assigned case coordinator through Manitoba Possible (formerly known as the Society for Manitobans with Disabilities) who collaborates with other team members and connects families to services and resources including home care services. According to the MB respondent, children with CP with the most medically complex needs will have a nursing or SW case coordinator from the Integrated Children’s Services team.

Two of the formal programs — in AB and NL — reported administrating programs via a coordinated multidisciplinary team. The multidisciplinary team is involved in all aspects of care and care coordination. In AB, the site’s care coordination team was reported to consist of a general practitioner, a specialist physician, an NP, a nurse and nurse manager, a physiotherapist (PT) and OT, a speech language pathologist (SLP) and SW, a psychologist and dietitian. The GPs, specialist physicians, and NPs all provided patient education in their formal program, while the triage of emerging medical issues and the conducting of initial needs assessments were the responsibility of GPs and specialist physicians. It was reported that GPs identify and acquire resources close to the patient’s home and specialist physicians manage acute situations directly alongside the NP, who also provides information and specialist support. The AB respondent further clarified that the management of consultations, therapies, and coordination of appointments and teams is carried out in a tertiary care setting but not in a primary care setting. The nurses, PTs, OTs, SLPs, and SWs were all described as being involved in managing consultations, therapies, and/or appointments, planning and assessment, information and specialist support, practical support, and mental and social support activities. (Table 1 contains a full list of these activities). Psychologists were reported to assist with learning needs and mental health, and the dietitians were reported to assist with monitoring nutrition and growth. Furthermore, the respondent reported that patients within the care coordination program receive support from SWs, who identify community resources and activities to address patient needs.

In NL, the site’s care coordination program — also known as the Pediatric Rehabilitation Process — consists of GPs (at the community level), specialist pediatricians (neurologist, developmental pediatrician, orthopedics), a nurse, a nurse manager, an LPN), a PT, an OT, an SLP, an SW, a social assistance worker, a recreational therapist, a psychologist, and an orthotist. The GPs, specialist physicians, nurses, and SWs are involved in activities of mental and social support, whereas PTs, OTs, and SLPs are involved in facilitating educational support, social services, or community support beyond the realm of health care. Recreational therapists, orthotists, and music therapists were described as organizing and coordinating recreational services.

According to the AB and NL respondents, the multidisciplinary health care providers collaborate with one another by attending regular team meetings, facilitating appointments, communicating referrals via a written or shared plan, and providing ongoing communication with families and patients.

Informal Programs

The respondents for the identified informal programs noted that there was no official care coordination role. In the absence of this, other professionals facilitate care coordination at these sites. ON Site 1 reported that care coordination was the responsibility of the medical director, while ON Site 2 reported it was the role of multiple health care providers such as PTs, OTs, SLPs, and SWs. The SK respondent reported that patients with complex care needs are assigned to a rehabilitation coordinator (OT), who develops a care plan that is then carried out by the multidisciplinary team. The team includes a specialist physician, NP, nurse(s), PT, OT, SLP, and SW. All three sites that reported having formal care coordination programs reported that care coordination was carried out by a multidisciplinary team. This was similar to the CMC and CSHCN groups in the literature, who frequently used nurses together with other support members such as clinical SWs, psychologists, family advocates, project managers, administrative coordinators, and dietitians as a multidisciplinary team to provide care.

Referrals to Medical Specialists

Referrals to medical specialists are handled by different professionals, depending on the jurisdiction. According to the BC respondent, referrals to medical specialists are directed by GPs, specialist physicians, NPs, and nurse clinicians. For multidisciplinary team assessments, the BC respondent reported that a complex intake review committee made up of an experienced RN, OT, PT, and SW reviews each chart and conducts an initial needs assessment. In AB, medical referrals are directed by nurses and PTs; and in MB, referrals are directed by the multidisciplinary team, including the GP, specialist physician, NP, nurse (e.g., RN, LPN, nurse manager), PT, OT, SW, and the service coordinator. In NL, the respondent reported that each week after the program’s CP clinic, the multidisciplinary team has a conference to discuss consultations and referrals, which are then carried out by the care coordinator.

Care Coordination for Rural, Remote, and Isolated Communities

There were no responses regarding care coordination for small, rural, remote, and isolated communities of informal programs (i.e., ON Site 1 and 2, and SK). Therefore, the following sections refer to formal programs, only.

Challenges to Accessing Care Coordination for Formal Programs

Respondents were asked if the process of accessing care coordination services at their sites differed for those living in small, rural, remote, or isolated communities compared with those living in larger population centres. Two of the respondents (BC and AB) reported that the process did not differ due to strategies in place to improve access for these communities. These strategies are subsequently described. In contrast, the other two respondents (MB and NL) reported that the process did differ for patients in small, rural, remote, or isolated communities. These respondents described that challenges such as accessing care and communicating with staff exist for pediatric populations in small, rural, remote, or isolated communities and that staff and resources are limited in these areas.

Strategies to Improve Access for Formal Programs

All four respondents reported that their program employed strategies to fill in gaps and remove barriers to timely care in small, rural, remote, or isolated settings. In MB, the respondent reported that strategies include phone consultation, virtual care, and coordinating face-to-face visits with medical appointments in Winnipeg at a centre for specialized services for children and youth. The BC respondent described similar measures including phone consults, coordinating community telehealth appointments, and coordinating face-to-face appointments with other medical clinics in the Vancouver area to minimize the number of trips, length, and depth of disruption for families from small, rural, remote, or isolated communities. At the time of the survey, videoconferencing was another strategy being explored by this respondent to break down barriers for children in small, rural, remote, or isolated communities. Shifts in access to technology and leveraging new technology were also noted in the literature as factors in facilitating better access to care for families, with shared IT infrastructure and other technologies being a priority.14 The NL respondent reported a rehabilitation program referred to as “Day Patient Stay Admissions,” whereby children in rehabilitation who require further treatments such physiotherapy or primary care are scheduled, in advance, into daily clinics for various disciplines. Participants may attend the rehabilitation program for one week or more depending on the treatments needed. Program participants travel from anywhere in the province and those travelling into urban areas from a small, rural, or remote area are provided accommodations such as a hotel or Ronald McDonald House located near the clinic site.

All four respondents reported providing outreach or having satellite clinics in small, rural, remote, or isolated communities. Regarding outreach services, members of the health care team travel to outlying communities to administer and plan ongoing care in collaboration with the primary care providers of the children with CP living in these areas. Two respondents provided the frequency of these travelling or outreach clinics: The AB respondent reported that outreach services are provided twice a year and the NL respondent reported that there are three travelling clinics that are provided yearly to the western, central, and Labrador areas of the province. The AB respondent reported that their site has outreach clinics in Red Deer, Grande Prairie, and Fort McMurray, whereby a physician and RN work with the child’s Allied Health Team to provide care. The physician and RN may also visit outlying communities within the city that have a large population of severely complex children (GMFCS Level V), including those with CP who may have difficulty accessing their clinic directly. In NL, members of the travelling clinic vary depending on the location of travel; a CP-specific nurse coordinator facilitates the western travelling clinic and a general nurse coordinator facilitates the central and Labrador travelling clinic. All travelling clinics consist of a nurse coordinator, LPN, SW, psychologist, orthotist, PT and OT; the central and western areas additionally have a pediatric-specific PT and OT.

Care Coordination for Priority Populations

Respondents were asked if the process of accessing care coordination services at their site differed for families of children with CP who are members of priority populations. Two respondents (MB and NL) reported “yes.” The MB respondent reported that children living with CP in First Nations, Métis, and Inuit communities receive care coordination from Jordan’s Principle case managers instead of care coordinators at the organization. Jordan’s Principle is a child-first legal requirement meant to prevent First Nations children from experiencing inequities or delays in receiving essential public services that are ordinarily available to other children.17 The MB respondent further reported that OTs, PTs, and SLPs play a significant role in First Nations communities by assisting in providing care coordination services to children with CP on and off the reserve. The NL respondent reported that children living with CP on the reserve may receive care coordination from Jordan’s Principle case managers and their care is also coordinated, as needed, by nurse coordinators at the hospital, either as an inpatient or outpatient. The NL respondent further reported that their team’s Labrador travelling clinic visits participants of their care coordination program (also known as the pediatric rehabilitation program) living on reserve to provide better access to care services.

The two respondents (BC and AB) reported that there was no difference in care for the children of priority populations described and that their organizations take multiple measures to ensure equitable access to services for all clients and are mindful of geographic location and barriers that priority populations face.

Objective 2: Current State of Funding for Care Coordination Services and Resources Across Canada

Seven responses out of ten sent surveys (70%) were received. Respondents were from BC (two organizations), ON (three organizations), MB (one organization) and NL (one organization). For clarity, the BC sites are distinguished by BC Site 1 and BC Site 2, and the ON sites are distinguished by ON Site 1, ON Site 2, and ON Site 3.

The literature suggests that social care costs, especially during childhood, are a main health care expenditure associated with caring for someone with CP.18 One study found that households with a child living with CP as compared to a child living with another special health care need had significantly higher out-of-pocket expenses, financial burden, time spent caring for the child, and greater impact on family work life.19

In response to questions about how various services and resources were funded, most services and resources were reported to be funded by a mix of public, private, charity, and out-of-pocket sources. Funding frequently comes from multiple sources for equipment, supplies, medication, home renovations, rehabilitation, counselling, respite care, nursing support, and education support. All of the respondents reported using public funding for equipment and rehabilitation therapies, whereby public funding was less common than out-of-pocket sources for home renovations. A summary of survey responses is presented in Table 3.

BC Site 1 reported that there were several different additional funding services provided by public payors including the At Home Program, Fair PharmaCare, and the Healthy Kids Program. However, the respondent noted that these are not specific to CP. The At Home Program in BC is a function-based assessment rather than a diagnosis-based model20 and is designed to support children and teens with a severe disability or with complex health care needs.20 The respondent further elaborated that families who are not eligible for public funding due to level of function or income status rely on private insurance, charities, or out-of-pocket sources in order to access equipment, services, medications, and therapies. Additional funding from charities are used to pay for sports and recreation programs, art and music therapy, van modifications, and time-limited private therapy to work on specific skills. The respondent from BC Site 1 reported that there are two charity funders specific to CP in BC: the Jason & Rand Fund and the JGL Foundation. The Jason & Rand fund provides an equipment subsidy through the Cerebral Palsy Association of BC.21 The JGL Foundation is a private charity that provides grants to individuals with CP to improve access to equipment, assistive devices, and therapies such as traditional physiotherapy or therapeutic horseback riding in order to enhance mobility and independence.22 Additional out-of-pocket funding is used for alternative therapies such as naturopathy, homeopathy, and cannabidiol oil.

The ON sites reported that additional funding from public payors is used in medical expenses, some recreational expenses, and some counselling expenses. Additional funds from charity are used for camps and vehicle modifications, and additional funds from out-of-pocket sources are used for private therapy such as OT, PT, SLP, and SW.

The respondent from MB noted that additional funds were used from public payors but did not elaborate what the funds are used for, and additional funds from charity are used for day camps and family support programs.

Funding Allocation Across Various Age Groups

Three out of seven respondents from BC Site 2, and ON Site 2 and 3, reported that age does not determine how funding is allocated. The other four respondents reported that funding was allocated to children aged zero to 18 years (MB, NL, and ON Site 1) or zero to 19 years (BC Site 1), aligning with the age eligibility for care coordination services, as well.

Funding Allocation Across Various Levels of Function

Three respondents from MB, NL, and ON Site 1 reported that the GMFCS level was utilized to determine how funding is allocated. The MB respondent reported that children with GMFCS Levels I and II do not receive the same level of funding for equipment and may not be eligible for therapy services in the school compared to children with GMFCS Levels III to V. The respondent from ON Site 1 reported that children with CP receive funded services if they require complex care generally associated with a higher GMFCS level. In addition, the ON Site 1 respondent reported that children with GMFCS Levels of IV and V are eligible to receive funding from the Make-a-Wish Foundation and can apply for this funding with the assistance of the social work department at their hospital site. The NL respondent described that the provision of resources and services is dependent on the care that is needed and the level of function, as well as the family’s financial needs. The NL respondent reported that families of children with CP may apply to a number of programs to access support such as the Special Child Welfare Allowance, NL Prescription Drug Program (NLPDP) or Direct Home Services Program. 23 Typically, respondents reported that children who have medically complex needs (i.e., requiring assistive devices) receive more services to meet these needs.

Gaps in Funding

When prompted, all respondents reported perceived gaps in funding for children with CP. For example:

  • One site reported a gap in funding for transportation.
  • One site reported a gap in funding for social work staff and support, which creates a gap in access for counselling and mental health support.
  • Two sites reported a gap in funding for higher-functioning children and middle-income families.
  • One site reported a gap in funding to meet the needs and demands for rehabilitation and therapy services.
  • One site reported a gap in public funding for equipment costs.
  • One site reported limited funding for recreational services, such as health and fitness maintenance, camps, art, and music therapy.

Three respondents (ON site 1, BC site 1, and BC site 2) expressed concerns that families will often narrowly miss eligibility for public programs because the cut-offs for funding are set at a lower functioning level (e.g., the GMFCS level is too low) or the family income is considered middle instead of low income. Given such gaps in public funding, families often pay out-of-pocket or apply for charity funding to obtain needed equipment, care, and support to empower the development of their child with CP. Moreover, the equipment needs and out-of-pocket expenses of children with complex disability, such as CP, are widespread and parental time to support caring for the child is extensive.24

Funding Services for Families in Small, Rural, and Remote or Isolated Areas

One respondent in NL specified that patients in small, rural, and remote or isolated areas are eligible to receive travel funding. The respondent reported that travel funding for these areas may be accessed by completing an application form via the social assistance worker at this site. The other six respondents reported that there is no specific funding available for patients living in small, rural, and remote or isolated communities.

Funding for Priority Populations

Six out of seven respondents indicated that there is funding available specifically for priority populations. Three respondents specified that patients with CP from First Nations, Métis, and Inuit communities are eligible to receive funding for medical equipment or therapy through Jordan’s Principle. The respondent from BC Site 2 reported that children with CP can also access equipment through the Aboriginal Infant Development Program and the Aboriginal Supported Child Development program. It was further specified that families of children with CP from priority populations would typically need to apply directly for the population-specific funding resources, such as those at the provincial and federal levels. The respondent from BC Site 1 also added that there is funding available for First Nations, Métis, and Inuit children with CP living on reserves through their respective communities. For example, children with CP of First Nations status are eligible to receive funding through the First Nations Health Benefits program and/or the federal Non-Insured Health Benefits program. Refugees new to Canada within the past year are eligible to apply for the Interim Federal Health Program, which can cover supplemental costs such as rehabilitation therapy and equipment provided there is appropriate medical documentation.13

The respondent from ON Site 1 specified that certain First Nations charity groups donate to the care coordination facility for patients with CP or to patient families directly; however, this is not a consistent source of funding.

Limitations

Although the survey respondents provided invaluable information, not all relevant agencies and provinces were represented. Providers in other jurisdictions and provinces or territories, as well as members of First Nations, Métis, and Inuit communities were not represented. A further limitation was that surveys were only available in English, limiting the inclusion of primarily French speaking facilities and respondents. Another limitation of the survey was the participation rate of 70% for both surveys. A potential factor for the lower response rate was the COVID-19 pandemic, which overlapped with the survey time-period and likely took precedence over time and resources at the participating facilities.

Conclusions and Implications for Decision- or Policy-Making

The overall objective of this Environmental Scan was to determine the current state of care coordination services and resources, and their funding, across Canada for children with CP. The survey responses from administrators of care coordination programs for children with CP, together with a previously conducted literature review by an external stakeholder, were the primary sources of information for this Environmental Scan. Responses came from six provinces including AB, BC, ON, MB, SK, and NL. However, due to the lack of representation from all Canadian jurisdictions and the small sample size, conclusions from the survey data should be interpreted with the limitations in mind.

Based on feedback from the care coordination survey, four out of seven respondents reported providing a formal care coordination program. Activities of care coordination included gathering information about the patient’s and their family’s needs, triaging acute and emerging medical needs, planning and assessment, specialist support, practical support, mental/social support, and patient education and advocacy skills. Activities consistent among all programs were identifying resources for the patient, initial needs assessment, gathering information from the patient, goal setting, co-developing a shared plan, patient education, health care navigation support, and advocating and coordinating mental health services. Providers of informal care coordination provided similar activities for children with CP. These activities were in line with those described in the literature.

Team-based, multidisciplinary, and multi-agency support are considered best practice care for children with medical complexities such as those with CP. Two respondents reported providing formal care coordination via a multidisciplinary team; however, all seven programs that responded to the care coordination survey stated that at least one or more disciplines were involved in the care coordination of children with CP. The primary and consistent contact for the formal multidisciplinary programs was a nurse coordinator, which was in line with successful models of care coordination in the literature.14 The number and types of disciplines were generally the same between these sites (with few exceptions) and typically included a general practitioner, specialist physicians, NP, nurses, OT, PT, SLP, SW, and psychologist.

Children were eligible for care coordination programs if they had a medical diagnosis such as CP; referral to the program through a doctor, NP, hospital, or self-referral; and in some cases medical documentation that the child is accessing multiple care services such as community or multidisciplinary support. Self-referral was described by one site in MB, which reported that case coordinators are assigned via a service known as Manitoba Possible. Most sites had a specific complex care program for children with complex care needs. Caseloads were reported and included up to 1,000 children currently accessing services. Typically, children exited a care coordination program when transitioning to adult services or they no longer required the service. All of the formal care coordination programs conducted outreach clinics for outlying communities to improve access to care for priority populations and medically complex children. Evaluations of formal care coordination programs are needed to assess the impact of these services on patient outcomes and these are ongoing in many programs.

Based on feedback from seven responses from the funding survey, respondents identified that resources and services for their site were funded by a mix of public, private, charity, and out-of-pocket sources. Although public funding was reported to be available for most services and resources, respondents described that families often had to pay out of pocket or seek charity funding in order to acquire the resources and services necessary for the improved development of their child’s functional independence. Respondents further identified several perceived gaps in funding for children with CP and their families. Some of these gaps included funding for transportation, mental health support, psychosocial assessments, limited staff and resources, limited recreational funding, respite care, and lastly, gaps in funding for children with CP who are higher functioning or from middle-income families who may be struggling to pay for services and equipment without government assistance. Certain jurisdictions, such as NL, have a more comprehensive list of public funding programs to assist families of children with CP, including travel funding, and to obtain necessary services and resources. Eligibility of these NL programs, such as the Special Child Welfare Allowance program, are typically based on a medical diagnosis of CP, the child's functioning, and family income.

Overall, this report provides an overview and description of some care coordination models and programs that exist across various jurisdictions in Canada. Certain programs reported a more comprehensive list of care coordination activities compared to others. This document may be used to identify areas for development in order to make improvements to the care of children with CP and their families.

About CADTH

Authors: Charlotte Wells, Deba Hafizi, Jeff Mason, Danielle MacDougall

Cite As: Care Coordination and Funding of Pediatric Cerebral Palsy in Canada — Project Report. Ottawa: CADTH; 2020 December. (Environmental scan; no. 97).

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