Including the Developmentally Disabled in Traditional Volunteer Programs: Why Organizations Should Do It, and How to Get There

by Kathryn Purdon , December 2003
published with permission

Introduction

According to Salley (2003), between 2.5 and 3% of the general population has a developmental disability. Unfortunately, members of this group are often misunderstood by the general population, and are almost always overlooked when organizations seek out volunteers to help support their programs (Hawthorne, 2003). Walcott (2000) reports that this occurs for a number of reasons: organizations' inaccurate assumptions about the population's (dis)abilities, beliefs that those with developmental disabilities have nothing to offer, physically inaccessible volunteer sites, unaccommodating volunteer policies and procedures, and general stereotypes held by members throughout society. Hawthorne (2002) adds that some volunteer managers are uncomfortable with people with developmental disabilities, and others assume that incorporating this group will come at too high a cost to the organization, either in time or money spent to accommodate their special needs. However, members of this group have a plethora of strengths, and a substantial number have the abilities and skills to not only contribute to the society as a whole, but also to offer their assistance to community organizations who provide social services to an array of populations. But before agencies seek to engage people with developmental disabilities in volunteer programs-as with any volunteers-they must ensure that they have a strong grasp of who these volunteers are; how they and the organization can help one other; the type of tasks that would be appropriate; and how to recruit, interact with, and support them.

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What Does "Developmental Disability" Mean?

Before diving into the processes of engaging this special population, it is important to actually understand who its members are. Gosden (2003) explains that the term "developmental disability" refers to the presence of chronic, severe disabilities resulting from mental and/or physical impairments that are manifested before the age of 22, are likely permanent, and lead to considerable functional limitations in at least three of the following areas:

  • self-care
  • self-direction
  • mobility
  • learning
  • receptive and expressive language
  • capacity to live independently
  • economic self-sufficiency

Mental retardation is similar, characterized by the occurrence of at least two considerable limitations (see the above list) that begin in childhood, and with an IQ of below of 70. The most common forms of developmental disabilities are mental retardation, seizure disorders, autism, cerebral palsy, and head injuries (Salley, 2003). This includes, among others, Asperger Syndrome, Down Syndrome, Fetal Alcohol Syndrome, Fragile X Syndrome, Prater-Willi Syndrome, and Spina Bifida. None of these inherently prevents someone from being able to interact with others or complete a set of challenging tasks; rather, each person that has a disorder such as these has a unique level of functioning-and, like everyone else, a unique personality. Williams and Roberts (1995) report that people with developmental disabilities create networks of sophisticated social interaction, forming friendships, adjusting to group norms, and maintaining a sense of self.

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Developmental Disabilities and Diversity

Many have suggested that, instead of being only an unfortunate problem, developmental disabilities are just another part of the concept of "diversity" (Mittler, 2003; Wehmeyer and Bersani, 2000). Because of this-and the simple fact that they are human beings-those in this group must be afforded the same rights as other individuals in our society. This includes living independently, making their own choices, pursuing meaningful careers, contributing to society, and enjoying complete inclusion into the educational, cultural, political, economic, and social landscapes of society. Within the realm of personal contribution, of course, is the practice of serving others, also known as volunteering.

Lautenschlager (1992) suggests that there are five philosophical issues on which the use of volunteers with disabilities is based. First, the universal right to volunteer assumes that all people are potential volunteers, and that all who have the potential to contribute to society should be given the opportunity to do so. Next is social equality and equal opportunity, which is the basic view that, as a fundamental part of life, everyone should have access to the benefits of volunteering. Barriers that would prevent this from being accomplished are correspondingly required to be diminished and/or eliminated, including the provision of support for volunteers who require it. Third, diversity as a positive force assumes that a volunteer base that represents the local population is both a rich resource and an enrichment to the organization. Fourth, the stance that volunteering is a benefit to the volunteer means that volunteer work is inherently advantageous to those who perform it. Finally, sensitivity to individual differences means that to act fairly toward all people is not equal to treating everyone the same.

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A Note of Caution

Another important issue to discuss here is that of the exploitation of volunteers with developmental disabilities. Shoultz and Lakin (2001) write about the former practice of forcing members of this population into low- or non-paying work in exchange for the privilege of living in a community setting, as opposed to an institution. This was abolished in the 1960s and 1970s with the passage of laws that made such practices illegal. This was followed in the 1980s by the inception of "voluntary work," or "extended training" in the supported employment movement, in which persons with developmental disabilities were offered opportunities to volunteer in prospective places of employment to gain skills, build relationships, and develop appropriate overall work habits in order to make themselves more marketable. Despite the value of the latter practice, Shoultz and Lakin report, many organizations have shied away from using members of this population in volunteer work. Fortunately, according to those authors, this trend is beginning to reverse, with the increased advocacy by, with, and for this population and the great need for volunteers across the third sector.

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It's Good for Everyone Involved

The Michigan Community Service Commission writes that supporting those with disabilities in volunteering in their communities benefits the organizations and people with which they work, as well as the volunteers themselves (2003). In addition to the innately valuable work that they do, through their service, these volunteers often change their own perspectives and those of the communities in which they work. Dawes and Rhoades (2001) also argue that such programs raise awareness about disability issues, including what they really are, who faces them, and what challenges they present. This practice also provides specific growth opportunities for the organizations with which they volunteer, as well as for the volunteers themselves.

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Benefits to the Receiving Organization

Of course, there are many issues to consider and address before bringing volunteers with developmental disabilities into an agency. As one might expect, this must come only after considerable preparation on the parts both of the organization and the volunteers. Given this effort, some might suggest that the costs outweigh the benefit of engaging a greater number of volunteers. However, there are many that disagree with this notion.

Studies show that increasing and supporting diversity in an organization-whether private, public, or nonprofit-offers that organization many benefits (Lautenschlager, 1992; U.S. Department of Education, 2003; Michigan Community Service Commission, 2003). The Diversity Challenge Website (2003c) breaks these down into several categories, including business, economics, and morality.

Regarding business, a diverse volunteer pool provides benefits such as improved public image, increased access to talented groups, diminished volunteer turnover, and improved overall financial operation. In addition to this, such organizations generally are more representative of society (and often the population served by the organization), are able to attract a greater number of service users, and appear more welcoming to clients, the public, and even other volunteers. The National Service Resource Center (1998) adds that a diverse volunteer force can generally more easily reach out to populations served by agencies, thereby enabling these agencies to better serve their clients. Lautenschlager (1992) also points out that such organizations are apt to make better decisions and become more creative and innovative.

From an economic point of view, diversifying the volunteer force can often bring additional attention-and money-from funders. As mentioned before, this population is underutilized in volunteering, and the current state of tight funding means that any method that favorably catches the eye of those writing the checks is a potential benefit to the organization.

The moral benefit is simply that including a wider range of people in an organization is "the right thing to do." Its practice corresponds with the assumption that every human is special and different, and that each has something unique to add to the organization.

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Benefits to the Volunteers

In addition to the obvious benefits provided to organizations, volunteers with developmental disabilities receive countless benefits, as well. Some of the many written about in the literature include social inclusion, personal contribution, personal development, networking, and status.

Being able to actually participate in society-outside of their typical "visits" to the community through group outings-is the first and most obvious benefit to volunteers with developmental disabilities (Amado, 2001; Lowery, 2001; Lautenschlager, 1992). Not only do such volunteers receive the opportunity to simply leave their typical day services, this presents them with the chance to truly become members of the community and to make friends with a variety of people. Through volunteering, they are able to feel a sense of real belonging, something to which they may not have been previously exposed.

One of the most profound benefits results in role changes for this group (Dawes and Rhoades, 2001; The National Service Resource Center, 2002; Amado, 2001; Lowery, 2001; Curley, 2001). Almost exclusively, it is them who receive the help from other people, which can be disempowering. When people with developmental disabilities are able to use their gifts and skills to help other people, they gain a fresh sense of independence and responsibility, which often brings increased self-confidence and greater feelings of empowerment, satisfaction, and happiness. Lautenschlager (1992) even suggests that volunteering has the capacity to bring greater health to disabled volunteers! People yearn to feel and be needed, and those with developmental disabilities are no exception.

Through the work itself, such volunteers also are given the opportunity to learn new skills, attitudes, and behaviors that will likely better enable them to function better in the context of the broader society, including aiding in the search for and performance in paid employment (Amado, 2001; Hawthorne, 2002; Hawthorne, 2003).

This is connected with the ability to network that volunteer opportunities often provide, which is the case for both those with and without developmental disabilities (Amado, 2001; Curley; 2001). Amado reports that approximately 70% of all employment is found through personal contacts. As discussed above, persons with developmental disabilities often do not have the opportunity to develop relationships with those in the community, and volunteering allows them to make both friends and connections.

As a general rule, those in a community who spend a substantial amount of time volunteering—or any time, really—are afforded an increased amount of respect and an elevated status. As a group that has been historically devalued, volunteering gives persons with developmental disabilities the chance to overcome commonly-held stereotypes and eventually be seen as an asset to their communities (Amado, 2001). Even within their routine circles of interaction, members of this group can be seen by their peers as more abled, special, and worthy of respect.

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What Can They Really Do, Anyway?

A lot-more than one might think. The literature portrays a vast array of activities and programs in which they have taken part in the past, through both individual arrangements and organizational supports.

The National Service Resource Center (2002) describes volunteer participation by those with disabilities in a number of events: caring for animals at a shelter, painting a mural in a playground at a charter school for homeless youth, sorting donated items at a food bank, making costumes for and supporting performances at a local theater, cleaning up graffiti, making wheelchair-accessible garden boxes for a school for the visually impaired, assisting the elderly in preparing for winter (by raking leaves, cleaning windows, and mowing lawns), and painting signs and tables for a nonprofit agency's children's garden.

Dawes and Rhoades (2001) report on their work on a program placing students with developmental disabilities in a variety of community organizations and performing many tasks, including: charity shops, a women's center, animal welfare agencies, publicity, administration, computers, supporting the elderly, and working with other disabled people in sports events.

Organizations that provide services to those with developmental disabilities often are key in placing their consumers in community volunteer placements. Curley (2001) writes that Option Quest, an agency that offers community-based employment and residential services to persons with developmental disabilities, places such volunteers at daycare centers, animal shelters, schools, nursing homes, libraries, hospitals, county parks, churches, and nonprofit organizations. These placements come with such responsibilities as: collating mailings; reading stories to children; feeding, walking and grooming animals; helping with recreational activities; serving food; beautifying nature; and many others. (See Hawthorne (2003) for an account of a program for disabled persons at the Humane Society of Austin & Travis County.) Salley (2003) reports that Career Industries, which provides community-based learning opportunities, activities, vocational training, and employment for persons with developmental disabilities, places consumers in a variety of activities and organizations. These include, for example, visiting with the elderly, collating church bulletins, beautifying a nature preserve, gardening and cleaning at a county-owned (nonprofit) long-term care facility, sorting clothing donated to a community closet, straightening magazines at libraries, delivering food with Meals on Wheels, and packing groceries at food banks. Walker (2001) writes about the placements created by Onondaga Community Living, an agency that provides residential and employment support to this population, places consumer volunteers at libraries, nature centers, peace organizations, and preschools.

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Getting the Volunteer Organization Involved

First Things First: Community Collaborations

It would be inappropriate and inaccurate to suggest that volunteer managers could simply engage and support volunteers with developmental disabilities in the same manner in which they do so for other volunteers. As is likely obvious to the reader, persons with developmental disabilities face many challenges themselves, and they bring these challenges with them when they volunteer. Rather than attempt to design and implement programs or recruit and manage these volunteers on their own, volunteer organizations (meaning the volunteer managers, generally) should collaborate with community agencies who serve this population in order to ensure that volunteer services are appropriate for both the needs and the skills of these volunteers. As discussed above, these organizations are often instrumental in such placements. They generally provide consumers with support in their daily lives-including residential, educational, social, and vocational aspects-and so they have both access to and a profound understanding of the needs and abilities of those with developmental disabilities. Lautenschlager (1992) writes that, typically, partnerships between the organizations with volunteers and the community support agencies are the manner in which those with developmental disabilities become volunteers, although the former could attempt this alone if it had substantial resources and was well-established in the community. So, the first step in beginning to develop a new program-or open an existing program to-volunteers with developmental disabilities is for the agency who will be utilizing these volunteers to develop relationships with organizations who already work with members of this population.

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Some Important Considerations for the Agency

As when working with all volunteers, volunteer managers in this situation will need to consider issues such as designing service positions, recruitment, interviewing, screening, placement, supervision, retention, policies and procedures, recognition, volunteer/staff relations, reporting and evaluation, and termination. Lautenschlager (1992) writes that these practices will likely need to be tailored to the needs of the individual volunteers. The thorough discussion of each of these issues is beyond the scope of this paper; however, there are several especially relevant issues to consider before beginning a program for volunteers with developmental disabilities.

The Michigan Community Service Commission (2003) suggests that there are seven steps to follow in making an organization accessible to and supportive of volunteers with disabilities: evaluating accessibility, developing inclusive task and activity descriptions, ensuring that all materials (and the recruitment process itself) are accessible to persons with disabilities, actively recruiting members of this population, providing necessary accommodations (within reason), retaining these volunteers through effective management, and including disability awareness training in staff and volunteer orientation sessions.

Murray (2001) and the Corporation for National Service (2002) suggest that volunteer managers in such positions ask themselves several questions about prospective volunteers with developmental disabilities. Questions covered include:

  • Why are we considering members of this population for volunteers?
  • What is our vision of how they would fit into the organization? What role would they play in its operations?
  • What skills and abilities do we expect them to have that can benefit our organization?
  • What do we have to offer them? What resources do we have that can ensure that they are able to experience meaningful service?
  • What other community organizations exist that could support us in these efforts?
  • How will we train them and delineate clear work expectations?
  • How will we support them in the work they undertake for us?
  • Who will be supervising these volunteers (both indirectly and directly)? Are they trained to work with this population and able to respect each individual's support needs?
  • What action will we take (and how) if such volunteers do not perform up to expectations?
  • How will the volunteers' needs be communicated to staff?
  • Are we willing to work with these volunteers to problem-solve?
  • Are there options to hiring any of these volunteers if their work proves to be effective and productive?

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Designing Appropriate Activities

While there are many tasks that volunteers with developmental disabilities may not be able to accomplish, there are number that they can (see the above section for specific examples).

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Training the Volunteer Organization

In most cases, the volunteer managers are the first people at the volunteer organization with which volunteers make contact. Lautenschlager (1992) reports that this person must be knowledgeable, skilled, and sensitive; he or she is generally also charged with helping the organization become so, in preparing it to work with special-needs volunteers. This generally involves developing diversity awareness, disseminating facts about developmental disabilities, and providing interactional training.

Many authors advocate for the use of diversity training to begin to acquaint employees of an organization with the concepts of disabilities (Diversity Challenge, 2002; National Service Resource Center, 1998; U.S. Department of Education, 2003; Lautenschlager, 1992). This, ideally, helps staff develop a collective understanding of diversity, creates an open discourse on the subject, and essentially develops an organizational consciousness about elements of diversity. This helps enable the staff to become sensitized to the special needs of volunteers with developmental disabilities. Such training would most easily be included in new-employee orientation, but beginning such training at any point is advantageous to the organization.

Providing all workers and volunteers at the organization with factual information regarding developmental disabilities in general-and, importantly, how these may relate to the organization-is also key in preparing the organization to work with these volunteers. The U.S. Department of Education (2003) reports that this information should be offered through both a one-time event and on a continuing basis to members throughout the organization. Walcott (2000) suggests that the volunteer manager ask a representative from a local disability advocacy or services group to come speak to the organization.

Some argue that the single, greatest barrier to persons with disabilities participating in society is the attitude of the public (Lautenschlager, 1992). Many agree, and argue that one of the most important aspects of educating people about those with disabilities is how to interact with members of this population (U.S. Department of Education, 2003); Walcott, 2000; Understanding Disabilities Creating Opportunities, 2003; National Organization on Disability, 2001). People who are experienced in this respect offer several suggestions:

  • Don't be afraid to ask people about their needs.
  • Be non-judgmental.
  • Seek to help volunteers, not to perform their tasks for them.
  • Focus on individuals, not on their disabilities.
  • Don't lean on someone's wheelchair or move crutches; those who use them view them as extensions of their bodies.
  • When conversing with someone in a wheelchair for longer than a few moments, attempt to sit down in order to see one another at eye-level.
  • Don't pretend to understand what someone says when you don't out of hurrying or fear of offending them; ask them to repeat themselves.
  • Don't be so fearful of making a mistake when interacting that you avoid attempting to communicate altogether.
  • Have a welcoming attitude and an open mind to learning.

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Recruitment

As discussed above, most volunteer organizations seeking to engage volunteers with developmental disabilities would likely seek out the partnership of an agency that provides services to this population. In recruitment, this provides an invaluable relationship (Understanding Disabilities Creating Opportunities, 2003).

In preparing promotional materials for this population-remember, a number of people with developmental disabilities can and do read-Diversity Challenge (2003b) reports that there are several ways to maximize both legibility and comprehension. Italicized, simulated handwriting, elaborate typefaces, and glossy paper are to be avoided; while simple contrast, Arial 14-point font, and uncoated paper weighing over 90gsm are ideal. Messages should be communicated in easy-to-understand words, and short sentences.

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Implementing Adequate Supports

Possible Accommodations for Persons with Developmental Disabilities
Physical

  • clear paths of travel
  • Braille signs
  • sensors or automatic doors
  • handicapped accessible restrooms, water fountains, and phones
  • adequate handicapped parking
  • ensuring physical access to and around the workplace
  • entrance accessible for those with mobility limitations
  • technical aids
  • movable seating
  • lift or elevator
  • user-friendly Website for those with visual impairments
  • information in alternative media
  • door handles at wheelchair height
  • wheelchair-accessible tables

Personal

  • frequent supervision
  • flexible scheduling
  • extra encouragement and assistance
  • communication access (for example, sign language interpreters)
  • clear, realistic, and flexible position descriptions
  • personal assistants, or mentors/buddies for work/orientation
  • individualized orientation and training

Adequate supports must be in place in order to enable these special-needs volunteers to function in a community organization. These include both personnel and the physical environment. Gosden (2003) provides a summary of the challenges that persons with developmental disabilities might encounter when working; these result from limitations in cognitive, motor, and social abilities. Cognitive impairments can include difficulty with reading, writing, memory, performing calculations, organization, and time management (including performing or completing tasks). Motor limitations can provide challenges in computer use, workspace access, and grasping or handling objects. Significant social considerations include emotional support, interactions with co-workers, and management by supervisors. Lautenschlager (1992) suggests that organizations develop a personal plan with each volunteer, including variables such as position requirements, personal contacts, special support/accommodations, and training needs. It is also essential to understand the goals of the volunteer, ensuring that they fit with the available volunteer opportunities.

There are specific practices and supports that may be put in place to help these volunteers perform their tasks in the provided environments, and such organizations should work with community agencies to determine what is needed on a case-by-case basis for each individual volunteer with a developmental disability. There are a number of authors who discuss these accommodations in depth (U.S. Department of Education, 2003; Lautenschlager, 2002; Diversity Challenge, 2003a; National Service Resource Center, 1998; Walcott, 2000; National Organization on Disability, 2001; Walker, 2001; Dawes and Rhoades, 2001). (See Figure 1 for a list of the possible manners in which organizations might need to alter their physical or management environments to support these volunteers.)

Lowery (2001) reports that there are people in the community who are willing to help organizations decide what are the "best and most reasonable accommodations" and assist in implementing them, and even to help educate agency staff about disabilities and how to ideally work with individuals with a variety of developmental disabilities. She also reports that the people with the disabilities can be a priceless resource for the organization, as they generally know best what they need. According to the U.S. Department of Education (2003), three-fourths of employers report that employees with disabilities require no physical accommodations, and that any needed changes cost $500 or less.

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Conclusion

Persons with developmental disabilities are heavily under-utilized in volunteer programs, despite their many potential contributions. Although substantial additional resources may need to be invested to engage and support this population in traditional volunteer programs, the literature demonstrates that it is well worth the effort. Benefits to both the volunteer organizations and the volunteers are numerous, and such programs are good for communities themselves. Fortunately, organizations who wish to look into this option do not have to work on their own; there are many resources in the community from which to solicit help. In order to find out more about volunteering for people with developmental disabilities (and other topics relevant to this population), you can visit the following websites: Diversity Challenge, Best Buddies, the National Organization on Disability, Governor's Councils on Developmental Disabilities, or Understand Disabilities Creating Opportunities.

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References

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