Impact Feature Issue on Aging and People with Intellectual and Developmental Disabilities

Over the past three decades, we have made significant progress to establish comprehensive systems to support citizens with developmental disabilities. Presently, however, this trend is facing formidable economic and structural challenges. What can we do? Part of the answer rests within us.

One of the strongest assets any community has is its people. People volunteer daily to do any number of tasks for others through structured groups or individual initiative. In addition, beyond individual efforts, any community also has an array of community serving entities, such as faith communities, schools, and clubs. Future systems must seek to forge alliances between individuals with disabilities, family members, and the array of community assets available to find additional means of support. To do so, we can develop lightly structured Peer Connection Networks where individuals offer one another mutual support. We may also go further to establish formal Human Services Cooperative (HSC®) companies where participants work together to manage the services that they receive.

Peer Connection Networks

Peer Connection Networks are not meant to take the place of public services. They are intended to generate complementary supports within communities. Here, participants unite voluntarily to address common needs. Such networks can be composed of individuals with disabilities, family members or both. A coordinator is needed to advise and organize the network, though it should ultimately be shaped by the needs and preferences of its members.

One aim of such networks is to assist participants to help one another by offering mutual support and sharing resources. In Stuttgart, Arkansas, families organized to provide one another temporary relief and other supports (Daignault, 2006). For instance, they organized a "Parents Night Out" where a few parents volunteer to manage activities and provide oversight at a central location (e.g., a church recreation room) for individuals with disabilities while their parents take time to see a movie, shop or just take a break. 

Families with older support-givers find the Network to be a great source of information and support. Older participants note, too, that they appreciate the social events that give them and their family member things to do. They also like that they can lend a helping hand to others and receive help back. One older parent commented, however, that it is important to have younger families involved, too, so that they can work together for change. "We are getting tired," she says, "and it's time for younger families to take our place."

Peer support may also be organized more formally through a "time bank." A time bank organizes participants within an exchange network where everyone's contributions are valued and tracked. For instance, at the Lynn Time Bank in Massachusetts an hour of help offered equals "one service credit." The hours of time a participant gives to others are credited to his or her "account" by computer, and hours of help the person receives are "debited" from the account. Participants e-mail each other with service exchange information, such as placing an ad for services ("I can provide transportation"), placing service requests ("I need a ride to my doctor Wednesday"), and confirming that the service took place. In this fashion, individuals reach out to others across an area to provide mutual support without heavy public agency investment.

Cooperatives

Individuals may also develop more formal cooperatives or companies where participants work together to manage the services they receive. In the current system, families may have lots to do to manage the services provided to the family member with disabilities. Working on their own, such responsibilities can prove burdensome over time. If families and individuals work together, however, many of the associated responsibilities taken on by families may be more easily managed. This can be accomplished by promoting partnerships within the public and private sectors -- for example by forming a certified Human Services Cooperative (HSC®) company. HSC® companies are directed by families and individuals who use human services; they provide a range of services that benefit the needs of the membership. The company itself may function as a provider agency, performing any number of jobs collectively for its members. This can include: (a) recruiting direct support staff; (b) acting as an "employer of record" for support staff in each household; (c) managing support staff and assuring that supports are properly delivered and accounted for; (d) purchasing services, equipment or other supports; and (e) acting as a fiscal intermediary to ensure that providers are paid, but also to offer providers worker's compensation and other benefits.

Some HSC® companies find a blend of older parents, younger parents, and self-advocates brings a healthy balance and perspective. Older members bring history and experience, though they often benefit from the energy younger members bring. All benefit from the social networking opportunities that develop across all ages. Finally, as younger members gain experience and take the leadership baton, older members can feel secure the next generation will carry on with their same common legacy, guiding philosophies, and principles that frame the companies they have formed.

HSC® companies are recognized by the Federated Human Service Cooperative, an organization whose goal is to "assist in the creation of Human Services Cooperatives". This national entity certifies the local companies directed by individuals and families who use disability services to provide supports that benefit the membership. Once certified, an HSC® company operates as a provider agency, delivering services based on policies formulated by member owners. Several local HSC® companies have been successfully implemented in Arizona, California, Illinois and Tennessee.

Managing Risk

Overall, Peer Support Networks or HSC® companies require that people work together to achieve common goals. The idea of people working together freely, however, raises concerns for the well-being of the participants, especially when people with significant disabilities are involved. What happens if a participant cheats another? Or if the help offered is unsatisfactory? Or someone is injured while providing assistance? These are good questions pertaining to the well-being of participants.

Concerns like these can be addressed in the same way as any volunteer program. Individuals can be screened to assure that eventual participants satisfy safety criteria. The program may also help participants get to know one another better before they exchange support, match individuals according to their needs and what they can offer, and provide means for participants to rate the help they receive. Certain members may also act as mentors to others to help them through the exchange process and monitor its outcomes. Further, staff or members in leadership roles may monitor activities across the exchange network. For instance, the nationally based Federated HSC® community and its members are comprised of a self-directed leadership that monitors its members. The idea is to build trust and reciprocity, but in ways that make the process transparent. Finally, Peer Support Networks and HSC® companies can obtain liability insurance to cover those offering their time. The insurance covers problems that can occur during a service exchange.

Conclusion

We cannot successfully confront the challenges we face by continuing to do business as usual. Times have changed and the systems that we put into place decades ago are not up to the challenge. Accepting the new reality, however, does not mean that we should become its victims. Change, after all, offers choice -- to either adapt and accommodate or to seize the opportunity to move the system forward.

States increasingly want to keep individuals home with their families for as long as possible. One reason is that providing supports to individuals while they live at home costs less than other alternatives. An unfortunate outcome, however, is that family households, including ones with aging support-givers, can become isolated, and so more vulnerable to sporadic crises.

In response, we can establish communities of association by working together to offer each other mutual support. We can build alliances with others to provide us enormous opportunity for reshaping future support systems. Several organizations nationally are already positioned to establish Peer Connection Networks or HSC® companies. Examples include self-advocacy groups, local Arc chapters, and other family advocacy groups. While these organizations may not be particularly charged with establishing networks or cooperatives, they may provide a useful local structure where such work can begin.