Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities

Consumer-directed community supports (CDCS) is a service option offered in Minnesota through the Home and Community-Based Services Waiver for Persons with Mental Retardation and Related Conditions (HCBS/MRRC). Hennepin County, which includes the Minneapolis metropolitan area, was one of the first counties in the state to partner with the Minnesota Department of Human Services to offer CDCS. This service option can be described as:

• A program in which individuals and families use individually-set budgets to purchase their own supports, with assistance from fiscal intermediaries that handle billing and payment.
• A part of the HCBS/MRRC, which requires supports to be habilitative (i.e., designed to support progress toward outcomes) and meet other standards.
• A program in which functional outcomes guide the services and supports a person uses, within the general rules of the HCBS/MRRC program.
• An option that empowers many families and individuals with more choice and control over their services and outcomes.
• A nationally accepted model of service delivery considered a best practice and future direction in the long-term care arena.

Hennepin County’s involvement in CDCS for persons with mental retardation and related conditions began following a heavily attended 1997 community forum called New Values, New Visions (Hennepin County, 1997). Feedback at this forum, as well as in subsequent focus groups with community members, indicated that county residents wanted more flexible, consumer-driven supports that offered people more choice and control over their supports and services. This vision propelled the County to enter into a Memorandum of Understanding with the Minnesota Department of Human Services in 1999 to offer CDCS.

The County is now a nationwide leader in the provision of CDCS. Currently, 43% (1346) of the people who receive HCBS/MRRC in the county use CDCS. Slightly more than half of these recipients are under the age of 18, with the average age at 19, and most CDCS recipients live at home with their families. In part due to how well it has been received in Hennepin County, the consumer-directed option is being expanded statewide for persons with mental retardation and related conditions as well as to other persons with disabilities.

How and Why Hennepin County Committed to CDCS

Hennepin County had been moving toward a commitment to self-determination and individually-controlled budgets for many years before CDCS became an option under the HCBS/MRRC program. In a variety of ways, it had worked toward shifting the roles and responsibilities of waiver recipients and social services staff. For example, from 1997 to 2000 the County worked closely with three other Minnesota counties (Dakota, Olmsted and Blue Earth) on creating more person-centered and consumer-directed services as part of the Robert Wood Johnson Foundation Self-Determination Project. Along with them, Hennepin County participated in national and local conferences and training events regarding self-determination. As part of its commitment the County hired personnel specifically assigned to the development of a model for individually-controlled budgets. Supporting this commitment and easing the process were internal champions and a community advisory group committed to making self-determination and increased control a reality for people and their families in Hennepin County.

There have also been several pressing problems that helped move the County and its service recipients toward CDCS. As in many places throughout the United States there had been a significant staffing crisis in this area. Traditional service providers often simply could not find and keep enough approved staff to meet the needs of the people to whom they were currently providing services. The reluctance of existing service providers to expand, coupled with a large waiting list of families and individuals needing services, resulted in a significant staffing crisis in the 1990s. CDCS has been an option to resolve this crisis by allowing families greater flexibility and direct participation in the staff recruitment and hiring process. This flexibility and direct participation has offered an opportunity to expand the pool of service providers to individuals who may not have otherwise provided services to individuals with disabilities in the county.

How CDCS Works

Under the CDCS option, Hennepin County’s role in the life of the individual receiving services has shifted from that of purchaser of services to more of a support function. However, the County retains some basic accountability related to assuring quality and equity. Although the program is consumer-directed, there are some components for which state and federal regulations require the County to be responsible. Additionally, the County retains administrative responsibilities that exist under the HCBS/MRRC program, such as determining eligibility and managing the overall waiver budget. The Memorandum of Understanding between the State and Hennepin County highlights a number of areas for which the local County agency is responsible. Examples include:

• Provide general information and assistance to families about the program.
• Review and approve the community support plan, and monitor and evaluate its implementation.
• Review expenditures regularly.
• Provide additional technical assistance if it is determined that the recipient is not following the community support plan (including corrective action plans) and, when necessary, discontinue CDCS after required notification.
• Investigate, provide notice and suspend CDCS if there are immediate concerns about health and safety or misuse of public funds.

CDCS has been a remarkable option with many positive outcomes for individuals and families, including:

• CDCS offers excellent flexibility for families by allowing them to select staff that they know and trust. This is especially important for Spanish, Hmong, Russian, American Indian, and other minority families. They have been able to hire staff who meet their needs for language interpretation and cultural sensitivity because they draw on their own community for staff rather than traditional provider agencies that may not have a presence in that community.
• Families are able to compensate staff more flexibly, within guidelines, and reward the skill and diversity that staff bring to their work.
• CDCS offers the opportunity for individuals and families to create services that are more responsive to specific needs within established guidelines. For example, an adult recipient who moved into a townhouse was able to access trusted and consistent supports for his specific needs while enjoying a natural home setting because of the flexible nature of CDCS. When problems and challenging behavior arose, staff and supports were reconfigured to meet the individual’s needs instead of the individual being asked to meet the expectations of the licensed agency.
• CDCS allows funding options for services and programs that were otherwise difficult to fund. These include various community respite services, summer camp programs, peer discussion and support groups, cultural programs and events, participation in weight loss programs or health clubs with adaptations, the purchase of adaptive equipment, and others, which were often impossible to pay for through traditional HCBS.
• For many families staffing problems have been solved and they have far greater stability and reliability with their employees.

Roles of Stakeholders in CDCS

Family / Person Receiving Services

• Develop a community support plan that indicates the plan for hiring staff, activities and other supports, and what the outcomes will be.
• Describe staff qualifications and a plan to address health and safety.
• Hire and supervise staff (which can be neighbors, family, friends, or people identified  through advertisements or other recruiting); select and hire a fiscal intermediary agency.
• Submit to the fiscal intermediary timecards and documentation of activities in order to be reimbursed.
• Annually report progress on outcomes to the county.

County

• Inform people about CDCS as a service option and provide options for hiring fiscal and support agents.
• Authorize services listed in plan in state management information system.
• Perform quality assurance activities including review support plan to ensure it complies with waiver requirements, annually review progress on outcomes identified in support plan, problem solve, identify inappropriate use of funds, ensure health and safety, and gather and respond to consumer satisfaction feedback.

Fiscal Intermediary

• Help family develop financial component of plan and ensure it is within individualized budget amount.
• Review timecards and documentation of expenditures from families.
• Bill the state system for waiver services, pay staff and reimburse families for expenses.
• Notify the County of any concerning activity.

Support /Coordinator Agent  (if hired and as requested by the family)

• Help develop support plan and develop staff job descriptions.
• Help monitor spending to stay within budget.
• Help supervise staff.
• Other assistance with plan monitoring and implementation, as requested by family.

Remaining Challenges

While Hennepin County has done remarkably well in moving into the CDCS option for people with mental retardation and related conditions and their families, it has not been a totally smooth transition. The shift in roles has meant that both the County and people receiving services and their families have faced a learning curve during the last several years. Many challenges have popped up along the way and many remain as the County moves forward with improving CDCS. When the concept of individually-controlled budgets and increased consumer choice and control was initially presented to County staff, there were concerns. A great deal of effort was put into researching models and establishing consistent procedures and guidelines. In this process, the County partnered with stakeholders invested in self-determination, and co-sponsored a Self-Determination Advisory Committee with Arc Hennepin/Carver. This group was comprised of service recipients, family members, service providers, advocates and County personnel and was organized around the principles of self-determination in all aspects of life. The group has been especially active and instrumental in contributions made to the CDCS program in Hennepin County. The County has also collaborated closely with other counties as a means to establish consistency in the program.

Due to the rapid expansion of the CDCS option in Hennepin County, the County has at times needed to backtrack to build more effective systems of support and monitoring for the already-operating program. Certainly a slower paced growth of CDCS would often be preferable in implementing individually-controlled options.

Additional challenges have arisen when state government has adjusted funding that the County receives. In such situations, the County has had to struggle with how to allocate resources and resource reductions equitably.

Hennepin County continues to struggle with decisions regarding individual situations, including when people can and cannot continue on CDCS, and the need to balance standardization of allowable expenses and options under CDCS with the promise of flexibility and “freedom” in buying one’s own services. It remains a challenge to define and refine the role of the County with respect to monitoring, quality assurance, and fraud investigations. County personnel who have previously been decision-makers and in the role of gatekeeping and monitoring have had to change their ways of thinking. CDCS has provided opportunities for much discussion and education for all stakeholders.

The Future of CDCS

As individuals with disabilities and their families using CDCS become more sophisticated, the case management role changes. Ideally, social work staff would be able to focus on people with greater or particular needs and on people with fewer natural supports, while those using CDCS function more independently. While CDCS offers many advantages for individuals and their families, Hennepin County, along with all stakeholders involved in CDCS, continues to identify and respond to issues that have not been faced in traditional service models. As consumer-directed options continue to expand across the state and country, it will be important for all stakeholders to learn from each other about effective ways to solve individual and administrative challenges.