Sustaining development with few resources (Latin America)
Living in a region with few resources available to support palliative care (in most countries it is still not recognised as a medical specialty) or the development of national/regional associations can be a Catch-22 for palliative care advocates, says Dr Roberto Wenk of the Asociacion Argentina de Medicina y Cuidados Paliativos and the Latin American Palliative Care Association (Asociacion Latinoamericana de Cuidados Paliativos, ALCP).
With few members to share the work, building an association can be painstakingly slow. Without financial support for association development, advocates must volunteer their time, stealing moments away from other professional responsibilities. It becomes hard for an association to offer services that would attract more members or support activities at the local level. Without resources for needs assessments or documentation of potential demand for palliative care, it is hard to make the case for financial support to build the infrastructure of palliative care associations.
There has been little support for palliative care development in Latin America from international development organisations, despite widespread poverty and recognised inadequacies in the region’s national healthcare systems, Dr Wenk observes. Important exceptions have included individual networking by palliative care professionals in other countries and support from the International Association for Hospice and Palliative Care (IAHPC), National Hospice and Palliative Care Organization (NHPCO) in the United States, and Sociedad Espanola de Cuidados Paliativos in Spain.
Dr Wenk says it is not clear why the international development community has not responded with support for national and regional palliative care development in Latin America, although the region’s problems and needs in this area are not well articulated or understood. He plans to work with NHPCO, Help the Hospices in the UK and others to better inform the world community about Latin America’s issues, to increase attention to the challenges it faces, and to develop more effective grant funding proposals for ALCP.
What would Latin America’s palliative care community do if it had additional financial resources? First would be to increase ALCP’s capacity, Dr Wenk says. It would also support national needs assessments and outcomes measurement to better document the need for and benefits of palliative care. Investment in education, starting with distance learning but also offering clinical training opportunities, is another high priority. “A lot of little things can be done with a small amount of money,” he notes.
Membership dues are an important source of income for associations, but certainly not the only one. This topic is discussed in detail in Next steps, Membership.
You can do much with limited funding, but at some point money will need to be found. Often, funds come in the form of grants given by other organisations. This section will offer advice on how to write your grant proposal, give you an idea of what documentation you need to present, and list some possible sources of funding. Also, you can subscribe to receive grant notifications in your jurisdiction from a resource such as such as Grants.gov in the United States.
Grant Proposal Writing Tips
By Corporation for Public Broadcasting (CPB)
This user-friendly guide offers helpful tips for each stage of proposal writing. It is offered to assist applicants to CPB grants, but is helpful for anyone writing a grant proposal. It includes recently opened grant initiatives at CPB and their request for proposal process, as well as a grant announcement subscription service.
Non-profit guides’ Grant Writing for Non-Profits
This guide is specific to grant writing tips for non-profit organisations and other community minded groups. It includes links for grant-makers and grant-seekers, glossaries explaining each step of the process, and sample proposals for illustration.
National Science Foundation's (NSF) Grant Proposal Guide, January 2010
This link will take you to a comprehensive guide on the grant submission process to the NSF and will give you a clear idea of the submission process and all the steps involved.
Hospice and palliative care costs are at times reimbursed by the government under a national health plan. Below are examples of payment structures from four countries. Note that advocacy is often needed to get palliative care included in the national health plan. To learn more, go to Next steps, Public policy.
Palliative care services are funded by sickness funds in Germany. In-patient units are either reimbursed via diagnosis related groups (DRGs) or special service per-diems. In-patient hospices are financed through multiple sources such as health insurance (Sozialgesetzbuch V), long-term care insurance (Sozialgesetzbuch XI) and charitable donations. Home care services are partially financed via sickness funds. Guidelines for the Prescription of Specialised Community Palliative Care (Erstfassung der Richlinie zur Verordnung von spezialisierter ambulanter Palliativversorgung) are on their way. This website is primarily written in German, with some information in English on the German healthcare system.
Funding for hospice and palliative care services in Australia comes from a variety of sources such as The Commonwealth Departments of Health and Aging and Veterans’ Affairs, states and territories, private health insurers and charitable organisations. With negotiations toward the 2008-2013 Australian Health Care Agreements under way, Palliative Care Australia (PCA), the national organisation representing the hospice and palliative care realm, hopes that further funding will become available to address the needs of an aging population living with chronic and life-limiting diseases.
This link will take you to the full report of the Palliative Care Australia submission to the National Health and Hospitals Reform Commission: End of life care is everyone’s affair — tackling the challenge of ‘end of life’.
England End of Life Care Strategy
Palliative care units within the national healthcare system are fully financed through the National Health Service (NHS). Hospice care, providing a wide range of services from inpatient beds to day care and home care, receives an average contribution of 32 percent of running costs for adult and 22 percent for children’s hospices by the UK government (2006 data). The rest has to be obtained through charitable fundraising.
For further statistical information, please visit Hospice Information.
A national Minimum Data Set (MDS) about hospice and specialist palliative care services is maintained by The National Council for Palliative Care (NCPC) to provide quality comprehensive data about these services and is available for download at http://www.ncpc.org.uk/mds/index.html. The NCPC Briefing Bulletin 15 (November 2006) provides an overview of the funding situation of specialist palliative care services from the National Health Service for ready reference.
United States of America (Medicare Hospice Benefit description)
While broad palliative care services are financed similar to health care in general, end-of-life care service provision in the predicted six-month interval prior to death is covered under the Medicare Hospice Benefit, as described in a Medicare booklet at this link. The payment system is based on a per-diem structure, where the amount varies according to the intensity of the care required by the patient, and according to the setting of care. However, studies have demonstrated that the average savings are $2,309 per hospice beneficiary, saving the government money each year.
Recognising and rewarding excellence
Many professional and community organisations recognise excellence through awards. This process allows organisations to highlight their and their peers’ achievements by participating in the nomination process. The reason for giving awards is to recognise and reward excellence. This can be in any category and in any profession that contributes to the advancement of quality care. Some organisations give out several types of awards, each for different purposes. Here you will find examples of awards by different organisations, and awards for special contributions.
National Hospice and Palliative Care Organization awards, USA
The National Hospice and Palliative Care Organization, USA, gives out more than 15 types of awards. This link will take you to a document describing each award and the criteria for each category.
Recognisng those who volunteer their time and efforts to support palliative care is especially important. There are ways to recognise the contributions of those who not get paid for their work. To learn more about the role of volunteers, please visit Starting from scratch, The case for volunteers.
Fundraising is crucial to the survival of an association. Even with a volunteer staff, you will need to find ways to finance your daily operations. There are many different sources of funding to support the work of the association, including:
local, state and regional governments
It is important to build effective relationships with those people and groups from whom you are seeking money. People donate money to causes in which they want to feel invested, so it is crucial to educate the community on your organisation’s unique contributions. Here you will find suggestions on donor relations, ways to raise funds and potential sources of funding.
By Joanne Fritz, About.com
Fundraising techniques evolve into new forms each year, but the fundamentals never change. This site outlines the basic elements of fundraising that are essential for fundraising efforts, including the diverse sources of funds and links to a variety of other tools and resources.
Nonprofit fundraising and grant writing
By Free Management Library
This site was designed to serve as a guide to help non-profit leaders establish a strong fundraising plan and programs for their organisations. The site also includes tips when considering contracting various fundraising services.
Top 10 Tips for World-Class Donor Relations
This site gives tips on making and maintaining successful donor relations. These tips have been adapted from Ken Burnett’s book, The Zen of Fundraising, which emphasises good, committed relations with donors.
Revenue from educational activities
Provision of services
Continued education is important for everyone, not just clinical staff members. National associations often take on the role of educating professionals at all levels by offering training opportunities in a wide range of areas. This allows members to advance themselves professionally, but it can also generate needed revenue to the organisation through such services as trainings, conferences, professional certifications, corporate partnerships and product sales.
Creating certification programs allows organisations to set standards of care and then certify those people who have been trained to meet them. Here are some examples of organisations that certify professionals working in the field.
The Association for Death Education and Counseling (ADEC) offers two levels of certification for professionals, certification in thanatology and fellow in thanatology. The certification process was designed to protect the public by creating a standard for thanatology practice while helping professionals develop and demonstrate their mastery of knowledge of thanatology and thanatology-related issues.
The National Association of Social Workers (NASW)
The National Association of Social Workers (NASW), USA, is the largest membership organisation of professional social workers in the world, with more than 150,000 professional members. The NASW Credentialing Center works to promote the professional growth and development of its members, and to create and maintain professional standards. NASW offers continuing education opportunities, credentials, as well as specialty certifications in different areas of social work. The newest of these specialty areas is Advanced Certified Hospice and Palliative Social Worker (ACHP-SW).
Promoting palliative care training programs suitable for African countries is a key strategic objective of the African Palliative Care Association (APCA), with clear goals and objectives for these programs. APCA acts as a facilitating body through the matching of requests for training with training providers. On occasions, APCA will itself facilitate a training program and draw upon the expertise of its members to support it in its work. It is important that each training program is adapted to the needs of the individual country and organisational settings.
Examples of training programs that have been facilitated through APCA include:
training of trainers (ToT) course for health professionals
introductory training in palliative care
training in organisational development.
St Christopher’s Hospice
The Education Centre works to advance St Christopher’s mission to promote and provide hospice care of the highest standards to patients and families in need. This is achieved through direct patient services, education and training for others, and comprehensive research into the needs of patients, their families, friends and caregivers. Education programs at St. Christopher’s, the prototypal modern hospice, include education consultancy and outreach, visits and clinical placements, and a bookshop and library.
A webinar is a seminar or a presentation delivered to an audience over the worldwide web. The Hospice Institute’s Online Webinars last from one to one and a half hours, and cover a variety of subjects and reach out to clinicians, administrators, lay staff and interested parties on end of life issues.
The Hospice Manager Development Program
The National Hospice and Palliative Care Organization's (NHPCO) Hospice Manager Development Program (MDP) is a comprehensive management training programme offering hospice-specific information to help managers develop the skills they need to meet the challenges and changes they face in managing programmes, systems and people. This program starts with a two-day intensive foundational course, followed by a variety of more advanced training modules.
Not only are conferences a good way to network with other professionals in the field, but they often also bring revenue to the organizing association. Below is an example of a palliative care association conference:
European Association for Palliative Care Congresses and Research Forum
The EAPC bring its members together for a biennial congress to network, learn of the latest developments in the field and renew their enthusiasm and energy for their profession. These congresses draw between 500 and 2,500 participants from all over the world.
Canadian Hospice Palliative Care Association (CHPCA) Marketplace
Your one-stop shop for hospice palliative care resources and information materials for healthcare providers, volunteers and family and informal caregivers. This site provides materials and resources to professional as well as goods and memorabilia to family and friends.
Another source of revenue can be realised by forming partnerships with for-profit businesses. The reasons for forming these relationships vary, from mutually beneficial agreements to opportunities for businesses that wish to make a charitable contribution. Here are some examples of partnerships between different types of organisations.
Heifer International cannot accomplish its mission to end hunger and poverty and to care for the earth by itself, so it has formed collaborations and alliances, gaining the support of like-minded, well-respected corporations to advance its mission. Unlike a sponsorship or a donation, these mutually-beneficial marketing partnerships are designed to support business-building objectives and to demonstrate corporate social responsibility.
To advance its mission to help the world’s children, UNICEF works closely with multi-national corporations, national companies and small- to medium-sized businesses to identify, design and implement alliances that also strengthen the corporate sector. These collaborations include multi-faceted partnerships, strategic philanthropy, employee-giving programs, special events, greeting card sales and support of emergency appeals. By working together, companies help to support UNICEF’s programs and emergency relief efforts as well as advance awareness campaigns on issues vital to children.
There are a number of helpful web resources on how to identify and respond to the funding requirements of international foundations that might support the work of your foundation.
Funders and grant makers that support palliative care in developing countries
This is a link to a report entitled A review of donor organisations that Support palliative care development in five world regions, web-hosted by the International Observatory on End of Life Care in the United Kingdom. It states:
"Palliative care developments are taking place across many resource poor regions of the world, much of them supported by third party donors and grant makers. Although some palliative care funders are well known and have a relatively high profile, many are not. Palliative care service providers and those seeking to promote and sustain palliative care initiatives in developing countries lack a rigorous guide to funding bodies, together with information about their criteria for support and terms of reference. This project will bring together the first ever guide to palliative care funders, worldwide.”
Initial work for the project was undertaken at an April 11-12, 2006, meeting in Washington, D.C., co-sponsored by the Office of International Affairs of the National Cancer Institute and the Open Society Institute International Palliative Care Initiative: Advancing Collaboration and Synergy for Palliative Care in Cancer and AIDS in Resource-Poor Countries. The purpose of the meeting was to increase funding, and funding collaborations, for palliative care activities in low to middle income countries.
International Association for Hospice and Palliative Care (IAHPC) online funding and grant resources
IAHPC’s website contains the Directory of Grants and Fellowships in the Global Health Sciences, a comprehensive compilation of international funding opportunities in biomedical and behavioural research prepared by Ms. Hannah Leslie for the John E. Fogarty International Center for Advanced Study in the Health Sciences.
NSF funds research and education in most fields of science and engineering. The information provided in this guide will aid in preparing documents required by NSF to conduct reviews of your organisation.
This is a collection of federal, state and local audit organisations in the United States tasked by the Comptroller General of the United States' Domestic Working Group to offer suggestions for improving grant accountability. The purpose of this document is to demonstrate the areas of focus of organisations giving out grants, and measures you can take as a grant recipient to ensure that you allocate your funds properly so that you could qualify for more funding in the future.
Guide to Opportunities for Improving Grant Accountability
This is a collection of Federal, State and local audit organisations in the United States of America tasked by the Comptroller General of the Unites States' Domestic Working Group to offer suggestions for improving grant accountability. The purpose of this document is to demonstrate the areas of focus of organisations giving out grants, and measures you can take as a grant recipient to ensure you allocate your funds properly so that you could qualify for more funding in the future.
Foundation Center for International Visitors
The Foundation Center’s International Visitors area is designed to help visitors from outside the United States find information on international grantmaking by U.S. foundations. Although the Foundation Center does not track information on charitable organisations located outside the U.S., similar organisations to the Foundation Center exist in Canada, Europe and other locations, and this site includes a collection of links to these other various philanthropic organisations. The site also includes a Proposal Writing Short Course in English, French, Mandarin, Portuguese, Russian and Spanish and Proposal Budgeting Basics in English and Spanish.
For further information on sustainability, please see also Further development of your association, Sustainability.