Table of Contents
Introduction
Objective and Approaches
APPENDIX A: Additional Objectives and Approaches for Future Consideration
APPENDIX B: Considerations for Understanding the Local Landscape
APPENDIX C: Other Donors Funding in this Sector
Introduction
In pursuit of its mission to improve access to quality healthcare for adults with developmental disabilities, the Special Hope Foundation has embraced an advocacy strategy with the following objective: to increase awareness of current gaps in healthcare access for developmentally disabled adults among parents, healthcare providers, policymakers, and funders, and to empower these groups to use their positions and resources to improve care. The strategic plan below outlines five approaches the Foundation has approved to achieve this objective and proposes activities for the Foundation to pursue. Arabella Advisors developed the plan through a participatory process that included: literature and internal document reviews; interviews with funders, issue experts, advocates, and policymakers; and facilitated Board discussions.
The new advocacy strategy works toward Special Hope’s mission and goal by addressing key needs and gaps in the landscape and capitalizing on the Board’s strengths (see Figure 1, below). It also builds upon the Board’s strategic priorities and preferences (see Figure 2, below).
The objective and approaches described in the body of this report align with Special Hope’s strategic priorities, provide opportunities for short-term wins, and reflect where the Board and Foundation are in their development. For each approach, we explain the activities, partners, and anticipated short-term (three to five year) and long-term (more than five year) outcomes. We also provide a table that summarizes the approaches to facilitate implementation. Finally, we include additional objectives and approaches in Appendix A as options that the Foundation may choose to pursue in the future.
Figure 2: Special Hope Foundation’s Strategic Priorities
| Target Audiences | Special Hope will target decision makers, including parents, healthcare providers, policymakers, and funders. |
| Geography | The Foundation’s support for advocacy will begin locally in California, primarily in the Bay Area. Ultimately, it will seek either to scale its efforts to new areas or to inspire others to replicate its work. |
| Timeframe for Impact | Special Hope will pursue a long-term objective (longer than five years) via approaches that will produce short-term wins (within three to five years). |
| Risk Level | The Board will prioritize core approaches that are relatively low-risk, with some money set aside for experimental approaches that will further the Foundation’s objective. |
| Types of Partners | Special Hope will collaborate with a wide range of cross-sector partners, including: parent/caregiver networks, advocacy NGOs, healthcare providers, universities, funders, and philanthropy infrastructure organizations. |
| Types of Support | The Foundation will achieve its objective primarily through grant funding and strategic partnerships, with the Board playing a complementary role by leveraging its time, talents, and connections. |
| Annual Level of Investment | Special Hope will invest approximately $700,000 per year in its advocacy work. Its approaches represent a range of investment levels: low (under $50,000), medium ($50,000-$100,000), and high (over $100,000). |
Objective and Approaches
Objective: Increase awareness of current gaps in healthcare access for developmentally disabled adults among parents, healthcare providers, policymakers, and funders, and empower these groups to use their positions and resources to improve care.
Healthcare access for adults with developmental disabilities is a neglected issue among policymakers, funders, and healthcare providers. A lack of accessible data on the effectiveness and costs of specific interventions, misperceptions about current funding gaps, and limited training for healthcare providers contribute to this issue’s absence from many decision makers’ agendas. Further, many disabled individuals and their family members lack the training, skills sets, and networks necessary to elevate their own healthcare needs with policymakers, funders, and providers through advocacy. By embracing the five approaches presented below, the Special Hope Foundation seeks to increase decision makers’ awareness of this issue – and ultimately, to spur them to use their respective resources to promote positive change on this critical issue.
Approach #1: Champion the growth of local support networks to empower self-advocates. Disabled individuals and their caregivers often turn to others facing similar challenges for assistance and advice, leading to the organic development of local support networks. Such networks enable individuals and caregivers to share recommendations about experienced providers, better understand their rights, and more successfully navigate the complex healthcare bureaucracy. As support networks become more organized, they can also play a role in connecting families to other key stakeholders, such as service providers, advocacy NGOs, and policymakers. One existing model in Canada, based on a social networking tool called Tyze Personal Networks, links informal and formal systems of care by connecting people with disabilities to each other and to service providers.
Where parent and caregiver groups already exist, the Foundation can provide funding to ensure their growth and sustainability and to allow them to share their experiences and lessons learned with fledgling support networks in other areas. Another option would be for Special Hope to help more-advanced groups connect with advocacy NGOs and major service providers, such as clinics and hospitals, so that people with developmental disabilities and their caregivers have direct lines of communication for voicing their needs and challenges. Through such efforts, Special Hope could help individual and parent advocates within a community become well connected, providing more opportunities for shared learning and peer awareness-raising. Over time, these well-connected communities also have the potential to become venues for shared advocacy at a larger level. Through growth and replication, peer support networks could even evolve into a powerful nationwide network that provides individuals and parents with a lever to influence the policies and decisions that impact their lives.
Approach #2: Encourage specialists to raise awareness and spur action among their peers. Healthcare providers with significant experience treating adults with developmental disabilities are important educational partners for Special Hope because of their credibility within the medical community. Providers who are passionate about treating this population have joined together in membership organizations–such as the American Association on Intellectual and Developmental Disabilities (AAIDD) and the American Academy of Developmental Medicine and Dentistry (AADMD)–to spur greater research, advanced training for experienced providers, and advocacy. In the past, both organizations have partnered with the philanthropic sector to develop education initiatives.
Special Hope could provide funds to enable such membership organizations to increase their outreach to healthcare providers who see adults with developmental disabilities in their practices, but do not specialize in treating them. A goal of this outreach would be to have more providers actively seek out specific training on caring for adults with developmental disabilities. In the long term, such awareness-raising outreach could lead to an increase in providers’ skills in treating patients with developmental disabilities. It could also encourage more providers to advocate within their workplaces for accessible equipment (e.g., height-adjustable exam tables), and within their professional/educational networks, including their medical schools, for more training on working with this population.
Approach #3: Make research accessible. Few policymakers prioritize disability rights in their legislative agendas, largely because of competing policy priorities and a lack of useful research and data. In addition, most policymakers are not experts on the healthcare needs of their developmentally disabled constituents. Relevant research and data would provide policymakers with information enabling them to weigh the costs and benefits of prospective policies and choose the options that provide quality care in financially sustainable ways.
Special Hope can help address the issue of insufficient and inaccessible data by ensuring that, where research does exist, policymakers can access it in user-friendly formats, such as one-page briefs and specific policy guidelines and recommendations. Through targeted grant-making efforts, the Foundation can encourage collaboration between research-oriented academic centers and advocacy groups to translate the latest cost-benefit analyses and other research into concrete policy recommendations. By providing policymakers with research presented in a way that is relevant to them, Special Hope can increase the chances that policymakers will make well-informed decisions that improve the quality of healthcare for disabled adults. Supporting the creation of translated research will also help the Foundation build its credibility with new partners that do not know its history and experience.
Approach #4: Create sustained learning opportunities for donors. Few private funders directly invest in activities that support people with developmental disabilities, partly because of a misconception that government funding addresses all of their needs. Special Hope can provide funding to enable advocacy NGOs to develop educational materials that will increase funder awareness of needs that currently go unmet. Through a partnership with a philanthropy infrastructure organization or affinity group, such as Grantmakers in Health, the Board can use its status as a peer funder to present these educational materials through conference sessions. Such sessions could raise funders’ awareness of the challenges this population faces, and drive more of them to seek information about how they can help.
In anticipation of funders seeking more information following conference sessions, Special Hope should consider ways it can provide ongoing funder education. One option is to reorient its blog toward a funder audience and brainstorm creative ways to market it to this audience; for example, through cross-posting on other philanthropy news sources. Another option, more resource-intensive but likely more impactful, is to develop the infrastructure for an affinity group. The group’s purpose would be to encourage information-sharing and collaboration, and ultimately to increase the funding available to address this issue. If Special Hope decides to embrace this approach, the Board should consider the strategies of peers that already fund in this sector to ensure that any new affinity group would be appealing and engaging to a broad pool of donors (see Appendix C).
Approach #5: Convene cross-sector audiences for increased communications and collaboration. Convening the right participants—those with shared interests and complementary skills and resources—for a clearly articulated purpose can be an extremely effective way of promoting information sharing and collaboration. As a funder with growing networks among parents, healthcare providers, policymakers, and funders, Special Hope can play a critical role by convening members of these groups that are interested in similar issues but that lack opportunities to interact. Bringing cross-sector groups together will help facilitate information sharing on existing efforts and challenges. In the long term, strategic convenings should promote greater cross-sector collaboration and provide stakeholders with a better understanding of the larger landscape in which they function. Understanding their peers’ priorities will help ensure that Special Hope’s audiences make decisions that leverage others’ efforts and avoid working at cross-purposes. Convening key stakeholders will require the Board to play a highly active role beyond issuing grants, including tapping members’ growing networks and ensuring that the Board itself has a deep and up-to-date understanding of its audiences’ and partners’ priorities.
Special Hope can support cross-sector convening by strengthening local support networks as described above. It can also fund creation of spaces where healthcare providers serving adults with developmental disabilities meet with funders. Healthcare providers can be important educational partners for Special Hope. Their day-to-day interactions with patients provide them with a uniquely comprehensive understanding of the needs of this population, making them credible partners for funders interested in learning more about the challenges and opportunities for funding in this sector. At the same time, donors’ funding ability, visibility, and networks in the policymaking and NGO worlds make them important partners for healthcare providers interested in advancing change on a larger scale. Ongoing healthcare provider-funder interactions can help create feedback loops that improve care by ensuring that funders gain understanding from providers on which new initiatives and interventions are most effective. Such anecdotal feedback from providers, along with more formal research, can give funders another data point about where their funding can be most impactful. As a result of these provider-funder meetings, a range of interested funders, including Special Hope’s Board, would better understand the needs, challenges, and opportunities for funding in this area. In the longer term, Special Hope and other donors can begin to use the experiences of healthcare providers as critical pieces of information that inform their funding decisions.
Figure 3: Summary Chart
| Approach | Activities | Anticipated Outcomes (short term) | Anticipated Outcomes (long term) | Level of Investment* | Partners |
|---|---|---|---|---|---|
| Champion growth of support networks | – Strengthen support networks – Connect groups to advocates and providers |
Individuals and caregivers are connected for shared learning and awareness-raising | Support networks are powerful levers for injecting the individual and parent voices into larger decision making | Low | Advocacy NGOs, hospitals, caregiver groups |
| Encourage specialists to raise awareness and spur action among their peers | Fund provider training | More providers are aware of training opportunities and seek out training | Providers are equipped to offer effective care and educate others | Medium | Provider membership groups |
| Make research accessible | Fund translation of research | Policymakers are more aware of needs | Policies improve as policymakers base more decisions on research | Medium | Academic centers, advocacy NGOs |
| Create learning opportunities for donors | Develop conference sessions and written materials, reorient its blog Design an affinity group | More awareness of funding gaps Easier for donors to learn and collaborate | More private funding is available to strategically address barriers to high-quality care | High | Advocacy NGOs, philanthropy infrastructure groups, other funders |
| Convene cross-sector audiences | – Bring together cross-sector participants and speakers – Fund convenings | Participants are more aware of the actions of their peers in other sectors | Participants collaborate more and consider their peers’ priorities in their decision making | Medium | Parent groups, providers, other funders, advocacy NGOs |
* The level of investment is defined as low (under $50,000), medium ($50,000-$100,000), and high (over $100,000).
APPENDIX A: Additional Objectives and Approaches for Future Consideration
Arabella initially presented the Foundation with two additional objectives: empower self-advocates and leverage healthcare providers. Although the Foundation did not select these objectives as immediate priorities, we include them here for the Board to use as a reference during future strategy discussions. We also propose one experimental approach per objective to address the Board’s interest in innovative opportunities.
Objective: Empower self-advocates.
As mentioned above, many disabled individuals and their caregivers lack the training, skill sets, and networks necessary to advocate for themselves and the disability community at large. As a result, disabled individuals may receive lower quality care and find that healthcare providers, funders, and policymakers overlook their perspectives when making decisions that critically impact their lives. The Special Hope Foundation can help tackle this challenge by supporting organizations that: improve access to existing healthcare and self-advocacy resources; build upon efforts to influence policy development; and explore empowering parental caregivers to become champions for issues that legislators are currently discussing.
Summary Chart for Empower Self-Advocates
| Approach | Activities | Anticipated Outcomes (short term) |
Anticipated Outcomes (long term) |
Level of Investment* | Partners |
|---|---|---|---|---|---|
| Improve access to existing resources | Fund distribution of resources | Individuals and caregivers are more aware of and have better access to training resources | Individuals and caregivers are better equipped for self-advocacy, which drives up overall quality of care | Low | NGOs, universities, state governments |
| Build upon existing efforts to inform policy development | Fund training and transportation | – Individuals and caregivers understand the role they can play in policy development – Easier for them to participate in policy process | Those most affected by policies have a greater say in policies that affect them and their family members | Low | Advocacy NGOs, individuals, caregiver groups |
| Experimental: Empower caregivers to champion legislative issues | Fund sessions to educate parents on issues and advocacy | Parents are more aware of relevant issues and advocacy opportunities | Parents serve as a consistent voice on key issues | Medium | Advocacy NGOs, parent caregiver groups |
Improve access to existing resources. A variety of healthcare and self-advocacy resources exist, yet few individuals and caregivers are aware of them or know how to access them. For example, multiple actors – from NGOs to universities to state governments – have developed checklists of preventive screenings that individuals and caregivers can request from medical providers. Others have created listings of doctors’ offices with accessible equipment. These resources empower individuals and caregivers to advocate for better care, and additional dissemination efforts would help ensure that these resources reach their intended audiences.
Special Hope could provide funding to advocacy organizations and service providers that develop these resources to support user-friendly circulation methods, such as through a web portal or primary care doctors’ offices. The ultimate goal of this approach is to empower people to use self-advocacy as a tactic to ensure that they receive high-quality healthcare. In the short term, the Foundation can expect individuals and caregivers to be more aware of the existing resources, have better access to them, and start to feel more empowered to advocate for themselves. Over the longer term, increased access to these materials will spur individuals and caregivers to engage in self-advocacy consistently and help drive up quality of care for all developmentally disabled adults.
Build upon existing efforts to inform policy development. People with disabilities and their caregivers can influence policy decisions by providing important anecdotal information about how public policies affect the services they receive. Experts in state government note that service providers often mobilize their clients to educate policymakers and make targeted appeals. Disabled individuals and their caregivers can provide such input and give voice to their concerns at budget committee hearings for the California legislature and elsewhere. They can also make their voices heard within California’s Department of Developmental Disabilities Services, which holds regular stakeholder meetings to develop policies and welcomes broad participation from the people those policies impact.
Through targeted grants to NGOs that work with grassroots parent/caregiver groups, Special Hope could build upon existing efforts to provide the necessary training and transportation to parents, caregivers, and people with disabilities, enabling them to contribute to policy development and travel to key budget hearings and stakeholder meetings. In the short term, these activities would make individuals and caregivers more aware of the role they can play in the policy process and make it easier for them to actively participate. In the longer term, individuals and caregivers would become more familiar with the policy environment and use their positions as constituents and healthcare consumers to have a greater say in the policies that affect them and their family members.
Experimental approach
Empower parental caregivers to become champions for issues that legislators are currently discussing. Although the Board has expressed hesitation about engaging in the policy environment, working with parental caregivers to spur advocacy for improved healthcare legislation would provide the Foundation with an opportunity to empower a discrete population. Because they would be directly impacted by specific legislation, parental caregivers can have a persuasive impact on policymakers if they are organized as a well-informed and unified voice.
The Foundation could provide funding to advocacy NGOs to hold regular sessions to educate parents and caregivers about relevant issues and the roles they can play as advocates. With its focus on policy and higher level of risk, this approach may fall outside the Foundation’s immediate comfort zone, but it could provide a unique opportunity for the Board to learn more about advocating for changes to state and federal policy. In addition to the learning aspect for the Board, in the short term, this approach allows the Foundation to make parents and caregivers more aware of legislative issues that affect the developmentally disabled, as well as the role they can play as powerful advocates. Eventually, the goal is for parents and caregivers to become a more unified group that can serve as a consistent voice around the hot-button issues affecting this population.
Objective: Leverage healthcare providers.
Many medical providers lack the specific training and competence needed to care for patients with developmental disabilities, leaving them unprepared for the complex medical issues and communication challenges common to developmentally disabled adults. This lack of education can lead to longer appointment times, neglected preventive screenings, and untreated illnesses. The Special Hope Foundation can help address this challenge by encouraging additional educational, training, and networking opportunities for providers that are likely to serve this population. In pursuing this objective, the Foundation’s Board can also expand its networks in the healthcare provider community, which will help it achieve its primary objective.
Summary Chart for Leverage Healthcare Providers
| Approach | Activities | Anticipated Outcomes (short term) |
Anticipated Outcomes (long term) |
Level of Investment* | Partners |
|---|---|---|---|---|---|
| Synthesize and distribute research and training materials | Fund modification and circulation of training materials | More providers are aware of the needs of this patient population | Providers can offer more effective care | Medium | UCEDDs, continuing education providers |
| Experimental: Support pilot trainings | – Fund providers to educate institutions about need for curriculum – Fund pilots | – Educators are aware of the curriculum and the need for it – One or more education providers pilots curriculum | Curriculum is revised, so other medical schools can adopt it | High | AADMD, medical schools, continuing education providers |
Synthesize and distribute research and training materials. University Centers of Excellence on Developmental Disabilities (UCEDDs) produce important publications, research, and training materials that could improve healthcare providers’ ability to treat developmentally disabled adults. While the providers trained at the UCEDDs are highly skilled, most adults with developmental disabilities receive treatment from primary care doctors and other local providers rather than from disability specialists. The UCEDDs do not have the capacity to formally train every provider that may treat an adult with developmental disabilities, but the effective training materials they produce could benefit a wide range of healthcare professionals treating this population.
Special Hope can raise provider awareness of the healthcare needs of adults with developmental disabilities by helping the UCEDDs disseminate their training materials through seminars, fellowships, or written materials. The Foundation could provide individual UCEDDs with grant funding to modify their training materials for a wider healthcare provider audience and to circulate the new materials within the provider community. Special Hope can also leverage the Board’s networks to enhance distribution—for example, by highlighting these materials at the University of California, San Francisco’s (UCSF) annual conference for health professionals on developmental disabilities. This support would make it easier for providers with little specific training to learn more about the healthcare and communication needs of adults with developmental disabilities. In the long term, the Foundation’s support of this approach can help ensure that a wide range of providers are better-equipped to offer effective care to people with developmental disabilities.
Experimental approach
Support pilot trainings based on developmental disabilities curriculum. Supporting pilot programs is inherently high-risk, but it also provides excellent opportunities to learn, expand the Foundation’s networks, and position the Foundation’s work for future scaling or replication.
One reason few doctors are equipped to treat this population is that medical schools do not currently mandate training on caring for adults with developmental disabilities. Donors and the American Academy of Developmental Medicine and Dentistry (AADMD) are seeking to enable more schools and continuing education providers to offer this training by creating a developmental disabilities curriculum and certification process.
Special Hope can play a critical role in these efforts by partnering with AADMD to help ensure that education providers offer this curriculum and certification process. For example, it could make a grant to AADMD to educate medical school deans and continuing education providers about the importance of this curriculum and couple this grant with support funding for early adopters willing to pilot the training programs. In identifying medical schools that could pilot these programs, Special Hope should prioritize those within its existing networks, such as UCSF and Stanford. It should also prioritize partnering with other donors in its existing networks to fund this work, as supporting pilot programs is likely to require a larger total investment than Special Hope itself intends to make. In the short term, this approach will ensure that educators are aware of this pilot curriculum and the need for it. It should also encourage one or more education providers to pilot these specific training programs. The pilots will provide AADMD with the data to revise the curriculum, as necessary, so that medical schools interested in implementing it in the future will have a high-quality, tested system to use.
APPENDIX B: Considerations for Understanding the Local Landscape
A critical aspect of Special Hope’s strategy is an understanding of the local landscape and key players working on healthcare access for adults with developmental disabilities in the Bay Area. Two resources that inform the Foundation’s learning about what is currently happening in its target geography include: A Scan of the Funding Landscape for People with Developmental Disabilities and their Health Care and A Blind Spot in the System: Health Care for People with Developmental Disabilities. The Foundation can continue to use the information in these reports to identify where local stakeholders working on this issue are most active and consider how their work affects Special Hope’s efforts.
As the Foundation moves forward with implementing its advocacy strategy, it may decide to conduct a more in-depth scan. A more recent and targeted scan should provide comprehensive information on the range of players working on this issue, including other funders, advocates, and parent groups. This analysis will help ensure that the Board has a thorough understanding of how its efforts fit into the larger landscape.
APPENDIX C: Other Donors Funding in this Sector
In addition to the funders identified in the funding landscape scan from Harder+Company, Arabella Advisors identified a number of funders supporting similar issues or populations that Special Hope may wish to contact as it builds out its donor networks:
- AT&T;
- Daniels Fund;
- The Joseph P. Kennedy, Jr. Foundation;
- Milbank Foundation for Rehabilitation;
- The Mitsubishi Electric USA Foundation;
- The New York Community Trust; and
- The SCAN Foundation.