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Listening, Learning, and Leading: Community Involvement Programs

By Jane Lawrence

Community Involvement Programs (CIP) is a non-profit organization that has been providing services to individuals with disabilities since 1971. Founded as an outreach of Westminster Presbyterian Church in Minneapolis, Minnesota, the organization’s programs have always been innovative. For instance, its early apartment training program provided opportunities for adults with developmental disabilities to learn independent living skills while residing in an apartment building with other individuals supported by the agency. This congregate setting was eventually replaced with scattered apartments that the agency rented; participants were placed with roommates and regularly met their support staff at the administrative offices to work on individual goals or to attend a variety of classes on community living skills. Today the program supports 80 individuals who live in a variety of settings, including several participants who have purchased their own homes.

The evolution of the apartment training program exemplifies the commitment we have made to providing services and supports that are innovative and reflect current best practices. The mission of CIP is “As listeners, learners, and leaders, we will stand with and support people with disabilities in their communities as they pursue their personal dreams and goals.” The organizational leadership believes that best practices are based on what matters to the individual, and the only way to know what matters most is to listen and learn.

In January 2001, CIP was selected as one of a number of provider agencies to contract with Hennepin County to provide fiscal intermediary and employer of record services. In Minnesota, most families that have individually controlled budgets are participating in the Consumer-Directed Community Supports (CDCS) option of Minnesota’s Mental Retardation and Related Conditions Waiver (MR/RC Waiver). The CDCS option allows individuals and families to develop a plan based on the person’s unique needs and situation. Each person is given an annual budget based on criteria determined by the county. Once approved by the county, families are then responsible for implementation of the personal support plan. Most choose to use an agency to provide fiscal agent and employment services.

The decision to seek involvement with CDCS was based on our belief that self-determination will continue to be a driving force in the direction of services to individuals with disabilities. We believe that supporting individuals and their families to implement an individualized support plan is an obvious way to further our mission. The administrative infrastructure existed that made it feasible to take on the additional administrative tasks with a minimal strain on existing resources. As the program grew, staff were added to support the increased number of families to whom we provide service.

As a fiscal intermediary, CIP pays for services provided and bills the state Medical Assistance program for reimbursement. For example, an adult receiving CDCS services might attend a weekend respite program that provides opportunities for outdoor recreation. The agency sponsoring the respite program submits an invoice to the fiscal intermediary agency for payment. The fiscal agent then submits regular billing to the state to be reimbursed. Any approved expenses listed in the Community Support Plan will be reimbursed.

As an employer of record, CIP hires people selected by the family or individual to provide support to the person receiving CDCS services. We ensure that all requirements for employment are met, including submitting a criminal background check form to the state Department of Human Services. The family is responsible for recruiting, hiring, and training their employees; we provide brief orientation materials for all employees that cover topics required by law or regulation. However, the materials clearly state that the family is the best source of information on how supports should be provided and the expectations of each staff person. We provide families with a packet of employment forms for each employee, as well as time sheets for their employees to submit. The managing party (often a parent, sometimes the service recipient) is required to sign all time sheets to verify that the hours were actually worked.

Although the employee is directly supervised by the family, we have made efforts to include CDCS employees in the activities of the organization. They are invited to an annual employee recognition event and are eligible to apply for a tuition reimbursement through CIP’s Employee Educational Assistance Program. We are currently participating in the College of Direct Support, an Internet-based nationally-available college for direct support professionals offering coursework in critical skill areas such as individual rights and choices, documentation, and safety at home and in the community, as well as important issues such as community inclusion and making friends. Participation in the college is offered to all interested families.

The fee structure for CIP’s fiscal intermediary and employer of records services is based on a monthly administrative fee plus a percentage of wages to cover payroll taxes and insurance. The monthly fee of $135 covers all administrative costs of providing both types of services. In addition, the MR/RC waiver is billed 11% on all wages paid to cover payroll taxes and insurance. Families have expressed their appreciation for the simplicity of the fee structure, which makes it easier to plan and budget for a year’s expenses. The fees cover the salaries and benefits for two full-time employees as well as a half-time director.

With rare exceptions, families have been overwhelmingly positive about their participation in the CDCS program. More than one family has told us, “This has changed our life.” For example, one family has two children who receive services. Due to a variety of issues related to the disabilities of their children, the family has never been able to take a vacation. The CDCS option allowed the family to have their support staff accompany the family on a vacation “up North” – a Minnesota tradition for thousands of families, but never before possible for this one. The staff were paid for providing supervision to the children so that the whole family could participate in the many activities at the lake resort. The waiver did not pay for the vacation itself – families are still responsible for lifestyle choices such as vacations and travel; however, under the CDCS option the waiver will pay to remove the barriers to participation that are related to the individual’s disability. Some other examples of how families have used the CDCS option include:

• A number of people have used funds to pay for a personal trainer at a local health club or YMCA. By paying for a personal trainer, individuals have made better use of their membership; instead of just going to the Y, the person who receives services has the opportunity to learn specific skills that contribute to life-long health and fitness.
• Several individuals have used CDCS funds to participate in creative arts programs as an alternative to attending an adult day habilitation program. Acting classes and music lessons have provided an excellent opportunity to increase self-esteem, enhance a variety of communication and physical skills, and provide a valued creative outlet.
• A number of families whose children experience challenging behaviors have used resources for karate lessons. Instruction for young people in the traditional martial arts had reportedly helped some of their family members by teaching self-discipline, respect for authority, listening and following directions, and as an added bonus – it’s “cool.”

In the three years that CIP has been providing fiscal intermediary and employer of record services, we have learned or been reminded of several important lessons:

• Supporting a family member to live in the community with an individually-designed and managed plan is hard work. Our approach has been to make things as easy as possible for the families. We have made extra efforts to be sensitive to the situations of families who experience additional challenges of underemployment, poverty, language barriers, and the cultural differences especially evident for families who have moved here from other countries.
• The language of formal supports can easily “spill” into supporting consumer-directed options. Words are very powerful, and we have made conscious efforts to carefully consider how we talk about what we do. We support “families,” not “clients.” We “get together with families” rather than attend a “staffing” or “team meeting.” We don’t do “intake.” Families are not “admitted” to our program, nor are they “discharged.” We work to be approachable and sound friendly – and the feedback we receive indicates that people appreciate our efforts.
• Consumer directed supports are not licensed services. Any protocol that would be automatic when developing a traditional program was reexamined. For example, most programs will have a new participant sign a Bill of Rights acknowledging their understanding of certain protections for recipients of licensed services. Since consumer-directed supports are not licensed services, we do not have participants sign a Bill of Rights; not only does it seem to us to be unnecessary paperwork, it also seems a bit odd to ask a parent or legal representative to sign such a form. As one family member told us “I’m not going to require my mother to read a three-inch stack of training materials and sign dozens of forms so that she can take care of her grandson.”
• This is not our money. We are not receiving a “rate” for a “unit of service provided.” We are simply processing the funds to assure that they are legitimate, approved expenses. It is not our role to question whether or not the family should be able to pay for vacation expenses for direct support staff to accompany the family for a once-in-a-lifetime trip to New York for a family reunion. If it was in the plan, and the plan was approved and authorized, we will pay it.

Success in providing services is based on relationships. When a family trusts us enough to share information about their family member, we should feel honored. Banks are generally not privy to information about the personal triumphs and challenges of their account holders. When a mom shares a story with us about having consistent staff and the difference it has made in their family, we honor their confidence and trust. We want families to know that we are available not only to pay their employees, but also to provide encouragement, support, advice upon request, suggestions when appropriate, and most importantly, to listen. Playing an integral role in consumer-directed options is one more way that “as listeners, learners, and leaders, we will stand with and support people in their communities as they pursue their personal dreams and goals.”

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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu). Citation: Gaylord, V., Moseley, C., Lakin, C. & Hewitt, A. (Eds.) (2004). Impact: Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities 17(1). Minneapolis: University of Minnesota, Institute on Community Integration. Available from http://ici.umn.edu/products/impact/171.

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