Aboriginal Children and Youth with Complex Health Care Needs

Aboriginal Children and Youth with Aboriginal Parents and Health Workers Preparatory Session Snuneymuxw First Nation Longhouse Longhouse Road, Nanaimo BC October 8 & 9, 2009

TABLE OF CONTENTS Section 1 Introduction Section 2 Overview of the Meetings Section 3 Session Outcomes Section 4 Program Considerations Identify Guiding Principles Establishing a Comprehensive Process Providing Key Supports 4 5 6 7 8 8 Section 5 Conclusion/Next Steps 13

1 INTRODUCTION On October 8 and 9, 2009 the First Nations Health Council (FNHC), Child Health BC and the Vancouver Island Health Authority (VIHA) convened 2 meetings with the First Nations communities on Vancouver Island, health care providers, and health agencies to examine how to develop a discharge planning program for Aboriginal Children with Complex Health Needs living on Vancouver Island. The meetings focused on how such a program could work with the Nanaimo General Hospital s new Child and Youth Ambulatory unit to improve the current discharge planning process, take advantage of the growing availability of to specialized services closer to the child s home environment, and coordinate more effectively with family and community realities. This summary seeks to describe the outcomes from each of those 2 consecutive meetings in the nature of a preliminary framework that can support the ongoing effort to develop an improved Child Health BC discharge planning demonstration project. Separate, more detailed summary reports are available for each of the 2 meetings. Working together as a community to care for children with complex health needs 4 First Nations Health Council

2 OVERVIEW OF MEETINGS On October 8th Health care providers, program managers, leadership and of course parents from the Aboriginal community participated in an Aboriginal session. The Aboriginal session was designed to provide those participants with an opportunity to: share experiences relating to children with complex health needs; explore ideas on how to improve the discharge planning process; and prepare to engage with other health agencies at the October 9th Workshop. On October 9th many of the participants from the October 8th meeting had the opportunity to engage in discussion with other health care providers such as the Nanaimo General and BC Children s hospital staff and provincial and federal health officials. The October 9th meeting was designed to build on the Aboriginal discussions of October 8th and to further explore how a Child Health BC sponsored discharge planning program could be developed. Particular attention was given to identifying how Child Health BC could proceed with developing such a program in a way that: Improves the current discharge planning processes; Responds to the needs of Aboriginal children and youth with complex health needs; Addresses the concerns of their families and communities; and Contributes directly to improved health outcomes for those children. In both meetings the participants received presentations about the sponsoring organizations responsibilities, related programming available and the current status of discharge programming for children with complex health needs in BC. Participants then engaged in plenary discussions and worked in smaller table groups to identify considerations that could guide the development of a new discharge program. For example on October 9th the table working groups were asked to consider the following questions when developing ideas for a Child Health BC sponsored program: Rountable discussions focussed on the following questions: 1. What are the needs of communities in receiving children/youth with ongoing health concerns back into their homes? 2. What are current gaps in services needed to meet these needs? 3. How can we use presently available resources to a better extent to: 4. Improve discharge planning at BCCH; 5. Involve others with the discharge planning process; and 6. Involve Nanaimo Regional General Hospital and others in meeting the needs of discharged children, youth and families. 7. How to work together to meet educational, equipment or interim operational requirements? 8. How can we best assist families and communities in navigating a multiple provider delivery service? (i.e. Identify roles and responsibilities? Provide better information and tools?) Aboriginal Parents and Health Workers Preparatory Session 5

3 SESSION OUTCOMES The participants in both meetings provided significant input in response to the issues raised for discussion by the hosting agencies. While the challenges and gaps identified were multi-faceted they were also consistent between the 2 sessions. They include pressures on parents/care givers to understand and make decisions with the situation they are now confronting, and to cobble together an effective support system for the child and family both in the community and between the home and the available services/facilities. There is also a view that there is a serious lack of services for dealing with children with complex health needs, little choice about what services to access, and difficulties accessing what services are available. When needs arise outside of normal working hours, particularly when it could be an emergency situation, these challenges are exacerbated. Other challenges/gaps include cross cultural/ cultural awareness difficulties, and supports that help with the transitions back and forth from the home to wherever the required specialized and follow up care is available, particularly the transportation, lodging and child care issues. Repeatedly the participants stressed the need for improved communications throughout the system. Perhaps the most complex issue identified was the challenge of dealing with the effects of poverty on the ability of parents, families and communities to meet the needs of children with complex health needs. Though summarized in greater detail in the summaries of each session, it is clear that the participants saw the need for the proposed new program and the important contribution it could make to addressing the challenges and gaps faced by children, families, communities and health institutions dealing with children with complex health needs on Vancouver Island. The participants were also clear in their willingness to work with the hosting agencies, particularly Child Health BC to develop and implement a more effective discharge planning process for Aboriginal children with complex health needs. It was equally "... there is a serious lack of services for dealing with children with complex health needs, little choice about what services to access, and difficulties accessing what services are available." -Participant apparent that the resulting program could be of general applicability throughout the province. It is important to note however that there appears to be a fundamental distinction in terms of the scope of a discharge planning program (e.g. process, services, supports, etc.) that needs to be addressed. The focus of the health institutions is seen to be primarily on the child who the patient and that patient s/child s specific medical needs. While consideration is given to the health services available within the community this is quite distinct from responding to the needs of the parents, family or community who are receiving these children. As a result, there is a strong, almost unavoidable need for a comprehensive integrated discharge program or strategy that includes linkages beyond what is normally delivered as part of the discharge planning process. 6 First Nations Health Council

4 PROGRAM CONSIDERATIONS Based on the discussions at the session a preliminary program framework emerges that can provide a basis for the continued development a Child Health BC facilitated discharge planning project that addresses the needs of Aboriginal children with complex health needs, the needs of their families and communities, and the needs of the health professionals, facilities and agencies. Considerations to guide the ongoing development of the program could include the following elements: a) Identify Guiding Principles Applying the following principles to the design, implementation and delivery of the new program: We commit to work together as a community providing consitent high quality care for children with complex health needs by: Being Child Centred, Family Focused and Community oriented; Respecting the diversity of Aboriginal peoples, communities, and families and incorporating Aboriginal perspectives; Enabling Children and their families to receive all the information and supports needed from the moment complex/substantial health needs are identified; Responding to the specific circumstances each child faces in their home, community, region and the specialized care facilities; Ensuring coordination at every step of the journey from the home to the hospital and back; Supporting access to specialized and followup services as close to the child s home as possible; Providing 24 hour/7 day access to the information necessary for informed participation by all parties; Working with all involved parties to ensure that every child is treated equally, regardless of status, residency or family composition; Creating trusting, communicative, culturally safe and accountable relationships; and Establishing confidence in our ability to meet the needs of all parties before, during and after the hospital stay. Aboriginal Parents and Health Workers Preparatory Session 7

4 PROGRAM CONSIDERATIONS b) Establishing a Comprehensive Process The discussion at the meetings suggests that a new discharge planning program be designed around 3 environments: 1. What happens at the provincial and regional health institution/hospital; 2. What happens with health services available in the community; and 3. What happens to support the participation of parents, family and community in a coordinated/integrated discharge planning process and the care of the child/patient. As children with complex health needs move between each of these environments the following broad goals or strategies can be applied: Recognizing that an effective discharge program for children with complex health needs requires direct involvement in, or knowledge of, the care plan by multiple parties (patient, parent/legal guardian, family, key community individuals, health service professionals and program staff, etc.); Ensuring that children, youth (and families) living with complex health needs have extensive integrated access to a wide range of available support programs and services when in care; Instituting effective transition processes for each and every time a child or youth with complex health needs makes the transition from a care facility to a home/community environment; Building relationships and processes that ensure children, youth and families living with complex health care needs have access to ongoing integrated care while in the home/ community; and Providing the supports necessary to ensure that families can get the patients to the care facilities when needed and to follow up appointments. c) Providing key supports The input of the parents, families, communities, care givers and health agency staff present gave strong voice to the sense that there were key supports that should be/could be put in place. There were calls for direct participation in planning and improved access to information to help everyone make informed decisions. There were calls for additional supports within health facilities, during transitions, and in the communities to make the journey easier for all involved. And there were calls to pursue longterm development goals such as creating other institutions/facilities. A new discharge planning program could respond to these concerns by: 8 First Nations Health Council

4 PROGRAM CONSIDERATIONS 1. Providing easy access to information on available supports There was eager agreement that a relatively easy way to improve the effectiveness of the current system was to was to empower everyone by making key information more readily available and accessible. The key suggestion was to create, or where they exist already, enhance information binders and data bases that help all parties to understand the system they are now operating in and describe what resources and supports are available for children, families, health professionals and health agencies. This information should be provided in formats that are easy to use and written for learning styles and literacy levels appropriate to the parties. Examples of the kinds of information that could be provided in this manner include: a. Description of the discharge planning process; b. The discharge plan; c. Client care information with insight into the specific medical conditions being addressed/ medications being administered; d. Checklists for use at stages of the discharge planning and follow-up process: i. A clear, thorough situation specific assessment of the individual child/patient that is culturally sensitive and responsive to the specific needs and circumstances of the child, parent, extended family, community and health services and supports available between the child s location and the Nanaimo General Hospital/BC Children s hospital; and ii. A readiness checklist that confirms that transportation in place; referrals are in place, arrangement made/approvals secured to meet expected costs (e.g. equipment, travel, medications, health professionals, etc.); dietary needs; information to reduce stress on expected issues; and alternative contacts and methods of communication (to assist those without phones). e. Services and supports: i. In and near specialized care facilities/ hospitals in Nanaimo and Vancouver (i.e. accommodations, shopping, laundry, bus/ transit options, Aboriginal organizations and events, etc.); ii. In the region of residence (e.g. specialized health care, social programs, see list above); and iii. In the home community (e.g. specific programs and services available, roles of community health and social workers, etc.). f. Available funding (transportation, equipment, home support etc.); and g. Contact lists of hospital and community staff/ advocates, health and social agencies, health care professionals, emergency care, etc.. 2. Increasing/Enhancing available Human Resources/Staffing In order to make a significant improvement in the effectiveness of a comprehensive integrated discharge planning program that responds to the 3 environments noted above there will have to be an increase in the number of qualified staff/human resources dedicated to working on discharge planning and follow-up at different points within the system. Suggested new positions or expansions of existing positions include: a. Additional Discharge Planning Coordinators/ Liaisons who would provide services to relevant departments (e.g. pediatrics and NICU); receive referrals for discharges; act as a case manager for children with chronic health issues, integrate discharge plans with community resources, and serve as a key contact between health facilities, physicians, communities and families. Discharge planning coordinators would need to have knowledge of all resources across the whole island and would be responsible for keeping the list of Aboriginal Parents and Health Workers Preparatory Session 9

4 PROGRAM CONSIDERATIONS resources up to date and accessible. Discharge coordinators would work in partnership with designated community liaisons (see below) to coordinate discharges between hospitals (e.g. BCCH and NRGH) and between hospitals and communities. b. Additional independent Aboriginal family support liaisons/navigators working with health facilities and First Nations communities and/or Aboriginal organizations to develop discharge plans; involve parents/legal guardians in the planning process; assist families access information, complete forms, attend follow-up appointments, and deal with the emotional issues; and coordinate amongst all interests at the regional and community level. c. Establishing a 24/7 call in line/support service to provide informational and emotional support. d. Enhancing resources for home support and community care nursing (with pediatric qualifications) to provide additional in home care for the child and a form of respite for the parent/legal guardian. 3. Increasing funding supports available directly to meet patient/parent needs The priority in this area was clearly on finding a mechanism pay to cover transportation, accommodation and child care costs during initial hospitalizations and for follow-up care and appointments. Requests were also made to find funding to cover non-supported expenditures such as those medicines and medical equipment costs not covered under Non-Insured Health Benefits (NIHB) and paying costs for other dependent family members/children and family helpers. A request was also made to find ways to equalize eligible resource levels between foster and family care and remote and isolated communities. Subsidy and/or incentive based funding approaches could be examined. In term of the NIHB it may be feasible to engage the NIHB coordinators, at the local level where NIHB is administered by the First Nation and at the FNIH BC regional level where NIHB is not administered by a First Nation, to ensure planned expenditures are properly managed/approved and to increase the ability of the system to respond to urgent and emergent situations. 4. Strengthening communication and networking The value of investing in improving the communications process and networks can not be underestimated. Strengthening communications can be seen as meeting both a critical need and pursuing a core strategy that supports information sharing and creating a stronger planning linkage between communities, hospitals, health services and health care stakeholders. The dialogue at the meetings suggests the need for a standing, mandatory, clear, concise and consistent communications protocol(s) 10 First Nations Health Council

4 PROGRAM CONSIDERATIONS those in the care of MCFD may be worth exploring further as well. and/or discharge service agreements between hospitals and health professionals/medical staff in communities and those involved in providing care to children with complex health needs. This could include Aboriginal Liaison Nurses, Community Health Representatives, Community Health Nurses, Maternal child health workers, Counselors, Social Workers, and the positions mentioned above: Discharge Coordinators, Aboriginal community liaisons and the call in support line staff. Use of a communications protocol could encourage the kind of information sharing that could contribute to a consistent level of care, access and eligibility approvals throughout the island. There is also a need to apply technology effectively. This could entail navigating through confidentiality issues to establish an information sharing system that access/provide information from multiple agencies. It also could entail finding ways to utilize e-health/tele-health systems being utilized throughout BC as tools to support greater participation by communities in the discharge planning/coordination process. References in the discussions to a form of health passport for children with complex health needs, particularly 5. Providing Education and Training Opportunities There are a variety of areas where education and training can provide for increased understanding of the needs of children with complex health needs and to support the ability of parents, families, community workers and institutions, hospital staff and health professionals/practitioners to effectively meet those needs. Consideration could be given to establishing a partnership between Child Health BC, the First Nations Health Council s Community Hubs and a post secondary educational institution for the purposes of developing and delivering directly and on-line the training needed. Areas of education and training include: a. Awareness of the new comprehensive coordinated discharge planning process and the discharge plan documents: b. Parental and community coping skills and strategies; and c. Cross cultural awareness between and amongst Aboriginal and non-aboriginal workers, communities and institutions particularly as it affects the discharge planning process, recognition of the quality and credibility of services and professionals in the Aboriginal community, and the coordination of a continuum of care for Aboriginal children with complex health needs. Aboriginal Parents and Health Workers Preparatory Session 11

4 PROGRAM CONSIDERATIONS 6. Addressing long term development needs There were a number of areas for action that could have a significant affect on the impact a new discharge planning process could have in meeting the pressing needs of children with complex health needs in the longer term. As such it may be that the improvements to the discharge planning process contemplated in the discussions and this summary can be seen as preparing a foundation through which other dynamics that have an impact on health outcomes can be addressed. There may be ways to include the following actions in the implementation plans for a new discharge planning process: a. Working with communities and health agencies at all levels to monitor where federal, provincial and community policies and procedures need to be modified to more effectively meet the needs of children with complex health care needs and their families, and advocating for those changes; b. Documenting success stories in coordinated approaches to meet the needs of children with complex health needs and publishing them in a magazine/communications document; c. Seeking to understand the impact of other underlying disorders/dysfunctions (i.e. alcoholism, colonization, residential schools, etc.); d. Building a family support facility/ronald MacDonald house near the Nanaimo Regional General Hospital; e. Building Aboriginal specific healing centres offering traditional medicines, ceremonies and foods, elders support, and alternative healing approaches within or near hospitals; and f. Contributing to the availability of health professionals outside of main centres and closer to/within First Nations communities. 12 First Nations Health Council

5 CONCLUSION/NEXT STEPS Subsequent to the meetings in October 2009 the host agencies have established a CHBC/VIHA/ FNHC Aboriginal Discharge Planning Group that will meet to review the summary reports of both meetings and this program design summary. This group is tasked with continuing the process of developing the new discharge planning program. This work is expected to include creating a proposal/program concept, vetting that proposal with the participants from the 2 meetings and other key interests as appropriate, and identifying potential opportunities for partnerships that can contribute resources to the further development and future implementation of the new discharge planning process. Given its mandate Child Health BC could also serve a convening function to involve multiple ministries in discussions of how to support the new discharge program and to explore some of the issues raised during the 2 meetings. It may also be necessary to undertake additional research to identify the number of Aboriginal children on Vancouver Island with complex health needs. Aboriginal Parents and Health Workers Preparatory Session 13

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