“This is a movement in self-determination coming from the field of developmental disability,” says Holly Bohling. “People who want to direct their in-home care have come together to form cooperatives.”
Bohling is a spokesperson for Federated Human Service Co-op (FHSC), a national co-operative of home-care co-ops whose stated mission is “to assist in the creation of Human Service Cooperatives” by providing “a network of resources that support [their] development and ongoing management.”
It represents a movement that sprang up five years ago and has seen amazing success in the form of rapid growth and increasing interest across the United States.
Self-Directed Services and Life Satisfaction
Human Service Cooperatives (HSC) provide an alternative for people with disabilities who wish to direct their own services. Consumer-direction can be an isolating experience for some consumers — the cooperative provides a greater sense of community.
The first co-op was incorporated in Arizona in 2003 via a grant from the Centers for Medicare and Medicaid Services (CMS). The intervening years have seen the incorporation of six additional member co-ops in Arizona, California, Tennessee, Illinois, and Michigan, as well as the formation of FHSC and the HSC Educational Foundation, a 501c3 nonprofit that is a fiscal entity for all federated members and “was established to enhance self-directed alternatives in health and human services that improve life satisfaction for people with all types of disabilities” (Federated HSC newsletter, December 2006, pdf).
Transforming the Traditional Model
By their very nature, health care co-ops embody the concept of consumer-directed health care. FHS has explained that the movement is not only “transforming the traditional model for human services by bringing together individuals who use human services” but is “simultaneously revolutionizing the traditional structure of cooperatives.” The co-op, once it is incorporated, applies through the state to become a certified human services provider. The co-op is then able to partner with traditional service providers to meet each members needs.
Bohling tells PHI that the result is a health care system that is enormously more responsive to the needs and wishes of consumers than the traditional model.
“People need to be heard,” she said. “People need to have their needs met. Most often people aren’t asking for unrealistic things. It’s just that the usual health care system creates an environment where they can’t get what they need, so they have to be more outspoken.”
She said the people the co-ops work with “are intelligent, they know what’s right and wrong, and when a huge, encumbered system is unresponsive, they get frustrated. But in the cooperative environment, there’s a way for them to be heard and design a system that actually works.”
Bohling also pointed out that the cooperative model is significantly more cost-effective: “In our CMS grant, there was research to show people spent less money in the co-op setting than they did outside of it. I think maybe it’s because they didn’t have to fight to get the care they needed.”
Building a Community
When asked about the role that health care workers play in this new cooperative model, Bohling becomes emphatic.
“We’re building community,” she says, “and that community includes the staff. The idea is that it’s a family. The members are part of their family. You’re family because you have a common need and a common goal, and that includes the employees.”
She stresses the central role that direct-care workers play in the financial and daily life of each co-op. “In one hundred percent of the co-ops we’ve worked with, the employee is a top priority,” she says. “And this means not administrators but direct-service employees. Of course administrative staff are necessary, but frequently in the co-ops they work out of their homes or borrow space in a community facility. You’re not going to find co-ops with beautiful, huge buildings and elegant board meeting rooms. When they plan their budgets, employee pay is the most important item. And second on the list is training.”
