Funder Scan

[1] It is important to reflect on these projections as, according to the World Health Organization, this segment of the population experiences poorer health outcomes and reports higher unmet needs than the general population. Moreover, people with developmental disabilities have added challenges accessing health care and are also more prone to have insufficient health care services.

With projections showing an increase in this population and an already weakened infrastructure of support, the current economic downturn will undoubtedly have tremendous consequences for people with developmental disabilities. With state and local governments facing flat or declining revenues, programs from Medicaid to housing are in jeopardy of reductions. As the full impact of the economic downturn continues to unfold, the Affordable Care Act has important implications for the health care of people with developmental disabilities.

According to the Arc, national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families, the Affordable Care Act includes several provisions important to people with developmental disabilities including the following:

• Expanding coverage for pre-existing conditions, eliminating annual and lifetime caps, and expanding Medicaid Services to individuals whose income is up to 133 percent of the poverty level.
• Expanding benefits to include products and services used by people with developmental disabilities.
• Improving access to quality care through health care service provider trainings, and ensuring that prevention programs include people with disabilities.
• Strengthening services and supports covered by Medicaid coverage for home and community based services, allowing states to offer additional services, and providing spousal protections.

The Special Hope Foundation

In 2010, the Special Hope Foundation crafted a new mission statement: “to promote the establishment of comprehensive health care for developmentally disabled adults designed to address their unique and fundamental needs.“ This newly adopted mission statement recognizes the numerous barriers that people with developmental disabilities face in obtaining positive health outcomes including the readiness and competency of the health care system to effectively meet their specialized needs. With the understanding that the existing system of care “provides inadequate consideration for the needs of developmentally disabled adults,” the Special Hope Foundation decided to undertake a study of the current funding landscape for this population. The Special Hope Foundation commissioned Harder+Company Community Research, a consulting firm that specializes in social sector research and planning, to review and analyze the current funding landscape for people with developmental disabilities and their health care.

Study Purpose

A funding landscape scan was conducted to inform the Special Hope Foundation’s future actions, including its upcoming strategic planning activities, by gathering information to answer the evaluation questions outlined below.

1. What other foundations are funding in this space?
2. What are other foundations funding?
3. What are the successes, challenges, and lessons to be learned from other foundations?
4. What opportunities and challenges are relevant to the Special Hope Foundation as they embark on their newly defined mission?

Organization of Report

This report is organized into four sections. Following the Introduction, section two describes the Study Approach including detailed descriptions of the key informant selection process, interviewing method, data analysis, and the limitations associated with this study. Section three presents the Findings that provide an in-depth analysis of the results including Current Funding Patterns, Challenges and Funding Needs, and Opportunities for Future Funding. Finally, the recommendations section presents opportunities for planning and action from the perspective of foundations funding in this area. Appendix A provides a profile of foundations interviewed.

2. Study Approach

This funding landscape study was informed by key informant interviews conducted with staff from foundations across the country that support people with developmental disabilities and/or have a major commitment to health care. The interviews were completed between April and June 2011.

Key Informant Interviews

A total of 80 foundations were identified to participate in the funding scan with 38 interviews completed, resulting in an approximate 48 percent response rate[6]. Of those foundations in which staff was interviewed, the largest proportion funded organizations in the West and Midwest (see Exhibit 1).

In-depth telephone interviews were conducted with foundation staff that felt they were able to speak to their foundations’ funding strategies as they related to people with developmental disabilities. Additionally, key foundations devoted to funding health care were also included in the study to better understand their perspectives in funding health care services for this population. Interview participants represented a variety of positions within the foundations including executive directors, vice presidents, program officers, grant officers, and managers. Key informants were identified based on recommendations from the Special Hope Foundation staff, The Foundation Center’s Statistical Information services[7], regional center directors, leading nonprofit organizations working in this arena (including the Disability Funders Network), and snowball sampling[8] from foundation staff interviewed for this study.

The interviews, each approximately 30 to 45 minutes in length, were designed in close consultation with the Special Hope Foundation Director to elicit information regarding current funding trends for people with developmental disabilities and their health care. The interviews explored a number of topics related to people with developmental disabilities including:

• Types of programs grantmakers support and their funding goals;
• Key opportunities for grantmakers;
• Funding gaps as they relate to health care for this population;
• Level of political support for improving the health of people with developmental disabilities;
• Innovative work or unique approaches practitioners, policymakers or other funders are undertaking; and
• Recommendations for future grantmaking in this arena.

Data Analysis and Limitations

Data Analysis

Content analysis, a replicable and systematic approach for identifying and extracting themes, was the approach used to examine the data using qualitative data analysis software known as Atlas.ti. In the initial reading of transcripts a coding scheme was developed that allowed for content analysis and identified common and divergent themes in the interviews. The second and third readings of the transcripts were focused on assigning codes to interview transcripts and deriving themes.

Limitations

The funding landscape analysis that follows aims to provide a comprehensive picture of funding for people with developmental disabilities and their health care. While the team made efforts to minimize the limitations of this study, a few limitations to this analysis should be noted.

• Participant self-exclusion from funding landscape may limit the comprehensiveness of the findings. Although a portion of the participants who opted out of the interview indicated their foundation did not fund in the area of people with developmental disabilities, there were several foundations contacted who did not respond to our emails or phone calls. These foundations may have been able to provide further data regarding this arena that is not presented in the findings below.
• While several measures were undertaken to identify foundations funding in this area (see Key Informant Interviews section), some foundations may have been overlooked in our efforts to interview foundation staff throughout the country.
• Key informant interviews rely upon self-reported data from respondents that can introduce a “social desirability” bias. When respondents are concerned about what the researcher may think of their responses, they may report what they think they should say (giving a socially desirable answer), rather than being completely candid about their opinions.

3. Findings

This section of the report provides a summary of the data collected from the funding landscape scan. The findings are organized according to three themes that emerged: Current Funding Patterns, Challenges and Funding Needs, and Opportunities for Future Funding.

Current Funding Patterns

The following provides an analysis of the current funding patterns for people with developmental disabilities that key informants reported. This segment begins with a brief discussion of the priority placed on this population by participating funders, followed by a summary that identifies the primary and secondary funding areas reported by foundation staff.

Prioritizing People with Developmental Disabilities

Less than one-third of foundations in the study have designated people with developmental disabilities as a priority population or focus of interest. Surprisingly, a substantial proportion of foundation staff interviewed explained that this population is not a target audience for their funding but may receive funding under other focus areas such as education, health care, advocacy, employment, or youth programming. Several reasons for the lack of intentional engagement with this population were provided: (1) service providers have not identified it as an area of need, (2) funders believe that the federal and state governments provide necessary services, and (3) foundations hold that health care should be inclusive of all “underserved” populations, not only people with developmental disabilities. As one foundation staff person explained:

“We don’t carve out people with developmental disabilities specifically. We include [them] in our top five priority areas. We support organizations who try to be more welcoming of people with all abilities in the areas of education, health care, employment, and housing.”

Despite the overall lack of support for this population, foundations that reported prioritizing adults with developmental disabilities expressed a high level of commitment by funding an array of service areas related to this population. As a program officer noted:

“We have a relationship with a lot of organizations providing these services for people with disabilities. We’ve provided continued funding; we have a select number of organizations on our watch list.”

Primary Funding Areas

Findings from this scan indicate that the vast majority of private funds for people with developmental disabilities are in the areas of residential care and housing, youth programs and activities, employment, capital and operating costs, and general health care and access (see Exhibit 2).

Residential care and housing. Foundation staff identified the “mainstreaming” of people with developmental disabilities into home-based or small group care as a funding trend among foundations in recent decades. This trend resulted from the nationwide closure of institutions that were once charged with housing and providing all needed care for this population. Respondents noted a need to fund services for people with developmental disabilities as they migrate to community-based group homes or private homes with the hope that they reach the maximum possible level of independence. Additionally, the long housing wait list for people with developmental disabilities was voiced as an additional rationale for dedicating resources to this area.

Youth programs and activities. Results revealed three general funding streams for youth with developmental disabilities. The first funding stream identified was for organizations that provide young children and their families with a spectrum of services including “early identification and screening of young children with developmental delays” such as Easter Seals of California. The second was funding to improve access to public places frequented by youth such as parks and playgrounds. Lastly, funding is set aside for “transition programs” that focus on helping youth transition to adulthood by ensuring that they have the necessary supports in place.

Employment. For many foundations, maximizing the level of independence of people with developmental disabilities includes integrating them into the general workforce. Funding in this area typically goes to programs “working with individuals who [were not] thought to be employable.” Foundation staff also expressed that recent federal and state government cuts resulted in priority changes that defunded workforce development programs for people with developmental disabilities, and this is where foundations are replacing lost public dollars. One foundation staff person added funding workforce development programs for this population could lead to additional benefits that come from employment including health care insurance.

Capital and operating costs. Recognizing that organizations serving this population often do not have the necessary infrastructure and capacity to do so, approximately half of respondents maintained that a considerable portion of their funding was in the area of capital and operating costs. Activities subsidized through this type of funding ranged from expansion of buildings to enhancement of organizational capacity to serve this population. One foundation structured an entire initiative around capacity building funding. The program officer of this foundation recalled, “These organizations are passionate, but don’t have the experience of seeing their board develop and improving other capacity building efforts.” A fewfoundations in the study also indicated that private funding helps organizations cover capital needs that government funding does not support.

General health care and access. Nearly all foundation who reported funding in the area of general health care and access disclosed that people with developmental disabilities represent a significantly small percentage of their funding under this area. In fact, foundation staff interviewed specified that the funding in this area for people with developmental disabilities was not tracked in their system. 

Other Funding Areas

Foundation staff also identified a number of secondary funding areas. The table below provides selected quotes that touch on other funding areas reported by respondents.

Challenges and Continued Funding Needs

This section examines challenges associated with funding in this area and the funding needs of people with developmental disabilities from the perspective of foundations.

Challenges

Three main challenges emerged from the findings. Unexpectedly, the first theme was the belief that health care for people with developmental disabilities is extensively funded by the public sector. The second was the anticipated decrease in government funding for social services that will impact this population. The third challenge reported by respondents was that organizations serving adults with developmental disabilities tend to work in silos, which has a negative impact on the population.

Funders perceive that the health care needs of people with developmental disabilities are adequately met through public sector funding.There was a widespread belief among funders that the public sector provides a large amount of funding to serve this population. A number of foundation staff remarked that the health needs of adults with developmental disabilities were already adequately covered, and they assumed this population qualified for government funding. Consequently, many foundations expressed that they did not want to “compete” with, replace, or duplicate the efforts of government funding. According to foundation staff, programs should exhaust existing government funding resources before seeking additional private support. As one grant officer explained, “We do not provide funds [to organizations] who do not accept government funding. We know there is a lot of government funding and we should not be replacing state funding for [people with developmental disabilities].” While acknowledging the need for additional support in this area, another foundation’s president and CEO noted that she did not feel her organization could make a significant impact because of the large amount of government support that exists. She said, “There is appropriate and relatively robust support from the government.  It is not enough support, but it is robust compared to other sectors.” At best, many funders try to supplement or complement publicly-funded services.

Ironically, many foundation executives mentioned that heavy government funding can result in systems that are inefficient and/or inflexible. As one interviewee put it, “Excellence is rarely provided when organizations are entirely reliant on government reimbursements.“For example, s/he went on to explain, individuals with Medicaid may have limited access to health care services and to providers who are willing to serve them due to low reimbursement rates. In interviews, difficulty arranging specialist care, reimbursement, and administrative hassles emerged as reasons for limiting Medicaid patients. Moreover, respondents also noted additional challenges in treating people with developmental disabilities such as inadequate patient time with providers that is crucially needed to serve this population. As one foundation executive noted, “There’s the degree of difficulty in treating this population. Medicare and Medicaid don’t come anywhere near the amount of time needed.“The president of another foundation agreed, noting that “In the current medical climate it’s really tough when doctors are trying to make a living and they have this ‘gun over their head’ and you can’t see these people fast…it takes more time with this population.”

Government funding for social services is decreasing. As many respondents explained, organizations that serve adults with developmental disabilities have historically relied heavily on the public sector as a primary source of financial support. A large number of interviewees spoke about decreases in government funding at the federal, state, and local levels for services that directly or indirectly support this population. According to one foundation executive, many of these organizations have been serving increasing numbers of clients over the years and the cost of business has been rising, but public funding has remained unchanged or even declined. Many interviewees remarked that they anticipate funding cuts to continue into the future, causing the current gap in programming to grow.  In particular, several people noted that flexible dollars have been shrinking and remaining funding is often designated for specific uses.

The gaps created by funding cuts to services for people with developmental disabilities at both the federal and state levels are proving to be difficult to fill, according to a number of interviewees. In many cases, some noted, service providers have not developed relationships with private funders because there was previously no need to do so. Interview participants from across the nation, including Texas, Ohio, Illinois, and New York expressed great concern regarding state budgets in particular. Several remarked that this service area, which has historically relied on state funds—including reimbursements that many claim are already inadequate—has experienced significant cuts. California was no exception. The vice president of one Southern California-based foundation explained that funding cuts were made in areas that have not received additional funding in years, exacerbating preexisting financial difficulties. Consequently, she explained, it has become more challenging to address individual needs as services are more frequently being provided in less expensive group settings.

Several people expressed concerns about shrinking Medicare and Medicaid budgets, entitlement programs under which many low-income adults with developmental disabilities are covered. There is widespread uncertainty regarding the future of these programs and an expectation that policies will become more rigid as the economy worsens. Many respondents anticipated that there will be further decreases at the state level as legislators continue to struggle with their budgets. According to some funders, service providers are keenly aware that shrinking public resources mean that programs and services need to be prioritized. Interview participants explained that people with disabilities often end up being a relatively low priority, partly because they do not have as strong a presence in advocacy at the federal and state level as other groups who are competing for the same resources. Many noted that non-mandatory services, such as respite care, activities, and supports, are typically the first to be cut.

Organizations and funding streams tend to operate in silos. One foundation’s vice president explained that “Funding for the services [that people with developmental disabilities] need comes from several discrete public sources, and there is usually not much complementary planning or coordinated use of public services. You’ve got siloed funding for siloed services, [which] leads to fragmented care.“In some cases, as another foundation executive noted, organizations that serve people with developmental disabilities may not even know about the existence of others that serve the same population. One funder expressed her frustration with organizations that do not communicate with one another and consequently make similar requests, creating competition for funding or leading to the duplication of services. Some interview participants mentioned that the organizations that serve this population need to network and collaborate with each other more in their service provision and advocacy efforts. Specific suggestions for ways to break down those silos included convening organizations, forming coalitions to facilitate working together, and offering training and technical assistance to inform service providers about the existing infrastructure.

Funding Needs

Interviewees identified three broad areas in which funding is needed to support the health care services for adults with developmental disabilities: increasing both the access to and quality of health care for this population, educating and training service providers, and supporting parents and caregivers.

Increased access to quality health care for this population. According to a number of foundation executives, many funders do not support “general health services” for people with developmental disabilities because they believe that sector is highly government funded. However, several interview participants noted that longtime shortfalls and recent budget cuts have resulted in a lack of health care funding for underserved populations who are uninsured or underinsured. In particular, respondents indicated that there may be substantial disparities in health care services for people with developmental disabilities with respect to quality and) access, as discussed below.

• Quality. Many interviewees believe resources should be directed to funding better training and career opportunities for health care professionals that serve this population. Some identified specific health care needs that are especially important for this population, including long-term care, home and community support, and integrated and coordinated approaches such as team-based care and bundled services. These respondents held that an overarching goal of health services should be to improve the quality of life while preventing institutionalization.
   
• Access. Transportation can be a barrier to receiving quality health care services for people with developmental disabilities, especially those who are reliant on public transportation, according to some of those interviewed. In fact, one New England-based foundation’s vice president claimed that transportation is the single biggest problem for this population. S/he explained that some transportation services do not cross county lines while others have a wait time of up to forty minutes and require twenty-four hour prior notice to use them.  Respondents also mentioned that many people with disabilities lack access to dental care. They stated that it is often easier for adults with developmental disabilities to obtain medical services than dental services.  Despite the need for dental care, one interviewee noted that he has seen minimal support in this arena.

Education and training for providers. According to several foundation executives, health care providers who serve this population often need education, training, and technical assistance. One program manager noted that “physicians’ offices are not equipped to physically and experientially deal with people with developmental disabilities.” It can be difficult for patients to find a physician who has the appropriate expertise. Several interviewees expressed the need for greater sensitivity when treating patients with developmental disabilities, noting that ideas of cultural competency that apply to other “specialized populations” should be expanded to include this population as well. As one foundation’s president insisted, “[Health providers] need to be specially trained, they have to be committed, and you have to have the time [in medical appointments].”

While several funders mentioned that it is a common misconception that only a specialist can treat patients with developmental disabilities, others noted that a relatively small proportion of health care providers have the knowledge and skills needed to meet all the needs of people with developmental disabilities. They stressed the need for incorporating this type of education in the medical curriculum so more practitioners are able to provide appropriate care. One example given is that training for medical professionals does not typically include rotations to practice providing services to people with developmental disabilities and exposure at the primary care level. Since health care provision is community based, there is no place where medical students/interns can “practice on” a critical mass of clients.  Adults with developmental disabilities avoid the health care system, over utilize the ER, and are sparsely distributed through doctors/clinics so that students typically never treat on the person, let alone enough to become familiar with this population. The vice president of one foundation explained that “Changing systems of care and professional competency behaviors [is] very difficult [because of the] sheer mass of providers…If you want to reach providers it is very difficult. They are in hundreds of thousands of places.” For this reason, he continued, a good place to start is with engaging medical schools and medical associations.

Interview participants also identified the diagnosis of developmental disabilities as an area in which medical professionals may need more education and training. For example, one funder commented that doctors do not regularly screen for autism and there is no “diagnostic toolkit” that easily lets them check for developmental disabilities. Another foundation executive commented on the significant number of people who are “on the cusp” of having a diagnosed developmental disability yet who are not engaged in the care system. Although these individuals may be high-functioning, a diagnosis could make them eligible for Medicaid or other public benefits whereas they may otherwise be uninsured, according to several respondents.

Support for parents and caregivers.  Foundation staff who were interviewed identified a range of supports that parents and caregivers of people with developmental disabilities need.  One senior program officer acknowledged the unique needs of older caregivers, explaining, “Because this population [of people with developmental disabilities] is aging, there is a need to provide support to their caregivers who may also be aging, who are often their parents.” A number of foundation executives noted that respite care, educational resources, support groups, and inclusive environments are important services for the caregivers and families of people with developmental disabilities. Others mentioned that medical day care centers are one way to support working parents of people with developmental disabilities. One participant also brought up the need for oversight, noting that developmentally disabled individuals may have an elevated risk of experiencing abuse. Some foundation executives explained that, while many services for adults with developmental disabilities are organized and funded by parents, they often lack the skills and knowledge they need to assert their rights and effect change. According to some respondents, parents may not have the experience to express a strong voice to policymakers about the needs of people with developmental disabilities. Several funders discussed the importance of educating parents about their rights and their children’s rights, for example within the school system, and how to help people with disabilities access services. Finally, a small number of respondents specified that good communication with health care providers is also crucial, since caregivers tend to see the day-to-day functioning of individuals with disabilities.

Opportunities for Future Funding

When asked to identify opportunities for future funding pertinent to the health care needs of people with developmental disabilities, the two most frequently recommended by funders touched on two different approaches to effecting change: (1) convening and coalition building at the direct service level, and (2) advocacy efforts and leveraging support at the policy level.

Serve as convener; drive coalition-building. Most interviewees who spoke about this topic referred to the value of convening service providers. “I think almost every social issue we have is addressed by multiple nonprofit providers and there’s a fairly huge lack of coordination of those services, said one foundation president. Referring to the increasingly pressing need for collaboration, a program officer from a different foundation identified dwindling support from public sources as a reason why service providers should begin to operate differently. Several people noted that foundations are especially well-poised to bring together diverse groups that work with similar populations or on similar issues. One vice president of grant operations recalled her experience with a number of grantees who expressed an interest in being convened on a regular basis. They took advantage of regularly scheduled meetings over a period of three years to strengthen their capacities as individual organizations and as a sector, ultimately establishing a coalition. From a foundation’s perspective, organizations can make a greater impact when they collaborate and build coalitions. For example, collaborating can enable service providers to work together to manage issues and obstacles that they have in common, identify common goals, and develop programs together. Several interviewees stressed the importance of having a unified voice and a similar message, as well as the benefit of bringing together groups with diverse opinions. Additionally, they continued, collaboration can help raise awareness about the spectrum of resources that are available to adults with developmental disabilities.

The idea that convening can be expanded to the broader community as well came across in several interviews. Funders indicated that social networks can foster a sense of responsibility for members of the community who have developmental disabilities. As one program officer explained, “You can’t just fund services…when your funding disappears, your services disappear. You need to work on building capacity in the community to…have services and infrastructure to support the person and coordinate care.”Interviewees recognized that foundations can also help strengthen the networks of service providers, experts in the field, and policymakers by bringing them together to discuss issues and recommend actions.

Finally, collaboration among funders themselves was stressed as a valuable tool for identifying the needs of developmentally disabled communities, examining structural barriers, building consensus on common strategies, and even pooling funds. For example, respondents noted that community foundations often collaborate with other funders, as dollars tend to be better leveraged with partners in place. While working together can be more impactful than going it alone, many interviewees remarked that they tend to work by themselves. This sort of collaboration is often lacking in the arena of developmental disability services, as one interviewee explained: “A lot of times funders do things on their own and there are not enough conversations or collaboration to get the support to the population. We hear about a lot of conferences about education and other topics but not any on people with developmental disabilities.”Findings indicate that leveraging resources can be an effective way for foundations to secure additional funding for health care for adults with developmental disabilities.

Engage in and support advocacy efforts. While several interviewees noted that foundations tend to favor funding direct services rather than supporting advocacy groups or lobbying efforts, they also asserted that the increasing scarcity of financial resources is cause for organizations and service providers to come together and advocate for the needs of their clients. Many of these same foundation executives argued that more funding should support the strategic yet under-resourced arena of health care service advocacy at the local, state, and federal levels. As one foundation director stated, “[it is] important to consider if [foundations] can, or how they can influence decision makers to have information to make intelligent funding [decisions]. Education of policymakers could be just as important as programmatic funding.”Specifically, some funders indicated that advocacy is often necessary for modeling programs that can be used broadly and making the kinds of systematic change that many argue are necessary in this field. While several foundations did state that they support health care advocacy in general, few focus exclusively on this population. According to interviewees, one potential approach to funding such efforts is to identify and build on existing advocacy organizations. It may also be beneficial to consider whether such efforts can be sustained at the community level or if it would be more effective to target statewide and/or national policy agendas.  Three main target audiences for advocacy efforts identified in interviews, discussed in detail below, were: (1) policymakers, (2) the public, and (3) service providers.

(1) Policymaker support. According to a number of interviewees, influencing the policies that affect people with developmental disabilities is one way to begin the process of improving the health care available to this population. In general, findings show that there is not much awareness among policymakers about the health care needs of adults with developmental disabilities or why it is an important issue. Many foundation executives commented on the lack of strong advocacy organizations in this arena, noting that this population does not have a “strong voice” and is “off the radar” for policymakers. For example, organizations that provide housing support may focus on the homeless population and neglect to consider people with developmental disabilities who are not homeless. In fact, one program director maintained that the current supply of supportive housing for adults with developmental disabilities, specifically housing that incorporates on-site clinics or other health center resources, is inadequate. Respondents also stated that adults with developmental disabilities and their families may have little to no experience or knowledge when it comes to advocating for themselves and communicating with decision makers. Many went on to explain that, without such communication, policymakers generally have a limited understanding of this population, their needs, and how to adequately serve them. In contrast, there are other groups with a stronger advocacy and lobbying presence, which often makes this population a lower priority to policymakers. As one foundation’s vice president explained, “There are so many other competing needs and voices that it’s one of many. It is not a high priority for policymakers. There is a need for a stronger voice.”

Foundation staff identified several approaches to educating policymakers and other public leaders about the needs of this population, what can be done to address those needs, and what types of outcomes are reasonable to expect. According to one foundation director, the role of effective advocates is “to make their side of equation the one that [that policymakers] should tip toward.”Some foundation executives suggested putting a “human face” on people living with disabilities. According to interviewees, effective advocates may consider meeting with policymakers as well as bringing them into the community to witness firsthand some of the services that are provided. Sharing what the issues are with policymakers and showing them how their decisions actually impact people can be very effective tools. For example, one interviewee suggested using “family stories and …visits to facilities that serve [this population], seeing people [with developmental disabilities] who work…so when they make the [funding] cut it’s people and faces. It’s stories that cut at the heart.”

Others suggested building and strengthening coalitions of groups with similar interests, such as public health, to educate policymakers by providing information and testifying at bill hearings. Such groups could also work directly with decision makers to help create legislation that is sensitive to the concerns of people with developmental disabilities. One grants officer remarked that advocacy efforts might be framed in terms of social justice, given that the civil rights of people with developmental disabilities are often infringed upon by systematic gaps in support, including unequal access to housing and employment in addition to health care. Another strategy on the national level that emerged from several interviews was to push congress to designate this population as “underserved,” which would then require a greater focus on addressing disparities and poor health care outcomes for people with developmental disabilities.

According to some interviewees, it is important to highlight the economic advantages to supporting this population given the public sector’s budget constraints. As one program manager explained,

“You have to be able to show that …making health care preventive [will] save dollars in [the] long term. That’s what they’re concerned about, particularly with budget cuts. How it will save the state money in future? Frame advocacy in terms of [the] economic benefit [of] increasing access to preventive services and health care.”

Along these lines, he suggested, any evaluations shared with policymakers should include a cost-benefit analysis component.

(2) Public support. A number of funders remarked that gaining widespread public support can be one of the most effective ways of influencing policymakers. Several interviewees suggested informing the public about the work that nonprofits do and the importance of that work. As one foundation executive explained, people with development disabilities tend to be a community that, “[Many] people do not see, understand, or know how to support.” The executive director of another foundation suggested that a public relations campaign could help bring about more awareness of this population. Finally, as another interviewee put it, “What is going to be the issue that we can get on the front page?” Several respondents acknowledged that building alliances and gaining public support is a long-term endeavor that would likely take years.

(3) Service provider awareness. Findings from interviews indicate that adults with developmental disabilities are also “off the radar” screen of many service providers, and there is need for keeping providers engaged in advocating for the needs of this population. One San Francisco-based foundation executive’s comments illustrate this phenomenon:

“I have been working in San Francisco in healthcare for 15 years …and this is the area I know least about. I’ve worked on both sides [in providing services and now in funding]. Very few populations, I would say that I don’t know about.  I can speak to different health disparities and speak with confidence.  However with this I can’t speak much to it, it’s unusual.”

Another foundation’s program officer remarked that health care providers themselves often do not understand the issues that people with developmental disabilities face with respect to health care access and quality, and there are currently few, if any, deliberate efforts to educate providers.

Not everybody who was interviewed was hopeful about the feasibility of advocacy and awareness-raising efforts. Some argued that people, including policymakers, typically must be impacted by an issue before they will get involved and they were skeptical about the prospects for gaining substantial political support. Several also noted that supporting the needs of adults with developmental disabilities may seem like a “niche” cause that is not likely to hold the public’s attention or to be a high priority for decision makers. Because adults with developmental disabilities and their caretakers are a small portion of the voting population, one interviewee pointed out, there is little political will to make them a priority. Another said,

<p“I don’t think that they [policymakers] will say they are against funding the disabled population but their actions say otherwise. I think politicians think the population will be taken care of by someone else. I think they come off as caring but financially they can’t. I don’t hear it [support for people with developmental disabilities] voiced in the political arena and I don’t think they want to bring it up because they can’t deal with it.”

One final caution about advocacy efforts that came up in some interviews is that, when service providers do engage in such efforts, they must take time away from the primary services they provide to do so.

Other funding opportunities.  The following funding strategies and opportunities were also recommended.

Underserved communities. Some interview participants noted that low income adults, immigrants, and other minority populations with developmental disabilities often experience more challenges with accessing quality health care than their more affluent counterparts. These populations are also less likely to have comprehensive health insurance, or to have any health insurance at all. A number of foundation executives mentioned that the most at-risk communities are often unaware that they are entitled to services, including screening for developmental disabilities, proper diagnosis, and linkage to programs.

Housing. Adequate, appropriate, and supportive housing for adults with developmental disabilities is another health-related need that was identified in many interviews. In the past, funders explained, people with disabilities were often housed in dormitory-style institutions; now, more adults with disabilities reside in what many consider to be more humane and cost-effective environments, often at home with family or in smaller group homes with peers. However, respondents noted that funding for home-based care and low-cost housing for this population is limited, and these individuals may need special housing to accommodate their unique needs.

Research. In addition to informing funders how to most effectively support this population, several interviewees indicated that building and disseminating research, logic models, data, evaluations, and best practices, will help raise awareness and build support for health care services for adults with developmental disabilities. In particular, a number of respondents asserted that there is a shortage of rigorous evaluations conducted by external evaluators that use control groups, explicit measures, and cost-benefit analyses in this arena. They claimed that these studies can be extremely beneficial to people with developmental disabilities. One grant officer pointed out that “[Foundations] are specifically poised to …initiate studies or white papers related to people with developmental disabilities” because they have access to funding and to experts in the field.

Health care access. As discussed previously, several interview participants felt that, as a population, adults with developmental disabilities require broader access to health care and higher quality health care. This includes access to health care providers who have the knowledge and skills to address and meet the needs of this population. Other respondents noted that there is also a need for this population to be served through primary care, for example by integrating mental health professionals with primary care offices. Some other aspects of health care that were identified as being particularly important were focusing on preventative care, following up with referrals, and having one “medical home” to coordinate care. While some funders did not have specific knowledge about this arena, there was a general sense that “access” to health care is a significant need.

Flexible funding for general operating support, capital grants, and capacity building. Some respondents felt that more diversified funding would create the potential for greater flexibility and efficiency. Also, they added, because flexible dollars are often the first to be cut when budget reductions are made, there is a need to replenish this type of funding. Several interviewees noted that, while many foundations only fund costs associated with specific programs, funding for general operating support is also needed. Foundation staff indicated that because many service providers that work with this population are already restricted by numerous administrative regulations, unrestricted funding allows organizations to prioritize their needs and to be more flexible and creative. In particular, unrestricted funding can help organizations maintain their systems and strengthen their capacity to serve their clients and expand their client base.

Pilot programs to explore innovative models of care. Some funders believe that health care reform allows for a unique opportunity to support pilot programs for adults with developmental disabilities. One foundation executive explained that shorter-term funding can be applied to testing innovative models of care that may later be applied more broadly. Examples of such programs include new models for group homes in which residents are encouraged to exercise, and developing opportunities for adults with developmental disabilities to make decisions and empower themselves to the best of their abilities.

Workforce development and employment opportunities. Several interview participants noted that many people with developmental disabilities are capable of being productive members of their communities. However, as one foundation’s Vice President pointed out, employment among adults with developmental disabilities is “devastatingly low.” She went on to say, “This population is…large…, and they can be an unbelievable workforce that could be advantageous to employers because people with disabilities want work and they are capable of doing more rote work; where others keep quitting they are amazing workers.”

4. Discussion

This report describes the current funding landscape as it relates to the health care needs of people with developmental disabilities. The Special Hope Foundation is poised to make use of this information as it develops its new strategic plan. The following recommendations are provided for consideration by the Foundation as it develops future program strategies.

• Educate and inform foundations about the health care needs of people with developmental disabilities. Findings strongly suggest that there is a need to educate funders about this issue, and to overcome misconceptions regarding the state of health care for this population and the role of government funding.  The Special Hope Foundation may wish to consider convening foundations to inform them about these issues, developing educational materials for distribution, and supporting research, studies, and white papers that shed light on the health care challenges faced by people with developmental disabilities.
   
• Convene organizations serving people with developmental disabilities.Several interview respondents expressed that organizations serving this population operate in silos.  The Special Hope Foundation may wish to consider convening service providers in this arena in order to identify shared goals regarding the health care needs or people with developmental disabilities, share effective and innovative approaches in this area, and increase collaboration across agencies.
   
• Organize foundations and service providers to jointly advocate for and bring awareness to the health care needs of people with developmental disabilities.  In addition to convening service providers and foundations separately, it may be beneficial to bring foundations and service providers together. Respondents specified that this would create a shared understanding of the issues in serving and funding this population.This would also create venues for service providers and foundations to identify opportunities to raise public and policymaker awareness of issues faced by people with developmental disabilities in accessing healthcare and to advocate collectively.<
   
• Support advocacy and systems change efforts.Many interview respondents reported that people with developmental disabilities as a group “do not have a voice” in the advocacy and policy arena due in part to barriers faced by people with developmental disabilities in advocating for themselves.  The Special Hope Foundation may wish to consider providing grants to advocacy organizations, supporting pilot programs and innovative initiatives designed to spur systems changes, or funding research as part of a broader policy and systems change strategy.
   
• Support education and training for health providers.  Health providers serving people with developmental disabilities generally do not receive adequate training regarding how to serve this population effectively. The Special Hope Foundation may wish to consider investing in programs designed to strengthen the capacity of the health care system by training current and future health care providers serving this population.

Appendix A

Profile of Foundations Interviewed

This table below identifies the foundations interviewed and provides information on the foundation’s mission and funding areas. The foundations are organized in order of how much of a priority people with developmental disabilities are for the foundations.