Our "News CLIPS" is mailed to you a few times each year, highlighting the important work of Real Choice Systems Change Grantees. In each issue, we interview project directors and present a few of the key strengths and challenges faced during program implementation. Each issue concludes with a list of pertinent articles inside the hcbs.org Clearinghouse.
States Creating Tools to Implement Self-Direction
The Independence Plus initiative promised to provide states with simplified model waiver and demonstration application templates that would promote person-centered planning and self-directed service options. Based on the experiences and lessons learned from states that pioneered the philosophy of consumer self-direction, these programs afforded service recipients or their families the option to direct the design and delivery of services and supports, avoid unnecessary institutionalization, experience higher levels of satisfaction, and maximize the efficient use of community services and supports.
In 2003, CMS awarded $5.4 million in Real Choice Systems Change grants to twelve (12) States (CO, CT, FL, GA, ID, LA, MA, ME, MI, MO, MT, OH) to develop Independence Plus programs.
Recently, www.hcbs.org staff interviewed grantees in Idaho, Montana and Colorado to discuss their successes and innovations as they implement their self-directed service models.
Rally for Self-Determination
Q. Promoting awareness of self-determination is often the first step in engaging and exciting consumers about options. What unique method of outreach did Idaho assemble?
A. To involve consumers, we first created teams of self-advocates for each of our 7 regions in the state. After recently graduating from the training program, they are now team leaders who will educate others about self-determination.
Name of Grantee: Idaho Department of Health and Welfare, Division of Medicaid
Date Awarded: 2003
As part of our Independence Plus activities, we started an outreach campaign referred to as the “Be Determined Bus Tour.” Starting in the north and southeastern ends of the state, two buses convened in the middle for a grand finale at the Capital. At each of the 36 stops, communities held rallies where people with disabilities, DD council members, providers, elected officials and self-advocates shared their ideas, information and excitement for self-direction with the public and the media. A film crew followed the tour and will be creating a documentary video and TV PSA on self-determination and self-directed services to get the message back out since enrollment begins this fall.
Two of the important lessons from the tour were partnership and outreach. Many towns had great turnout, but attendance was best when service providers were collaborators, offering assistance and providing transportation. Secondly, winding the tour through Idaho allowed us to plant the seed around the state and people really appreciated us coming to them. Seeing rallies in their own community and learning about how people with disabilities can have choice and control made a big impact.
Training Support Brokers
Q. Obtaining the skills required to be a successful Support Broker can be tough. Idaho chose to deliver the course work through technology; can you tell us how this program and delivery method evolved?
A. Lots of discussion surrounded the decision to use the internet. Being a rural state, we needed a way to reach out to potential support brokers. The “My Voice, My Choice” training program evolved as a way to educate people who may or may not even have clients yet.
Broken down into six modules, the program uses activities, reading components, video clips introducing self-advocates and families to demonstrate the various concepts of self-determination. Modules cover such topics as roles and responsibilities, person-centered planning, necessary skill sets, ethics and professionalism.
Visit the My Voice, My Choice Training Program Website
The last module includes a resource list to help brokers serve various employers. Throughout the sessions, trainees have the ability to self-monitor their progress and at the end of each section complete a quiz.
The curriculum will continue to evolve based on experience and feedback. Recently self-advocates suggested that on-line training may not be enough, so in the future we will require an in-person component and on-going educational supplements.
Rural and Tribal Connections
Q. Montana has a vast delivery region. What kind of alterations did you make to provide services in a rural or tribal setting as opposed to the urban environment?
A. Consumers in the remote areas of Montana had not been accessing traditional state plan services either because of logistical or cultural barriers.
Name of Grantee: The Montana Department of Public Health and Human Services
Date Awarded: 2003
For the outlying rural regions, transportation and access to services was a huge barrier. Our Big Sky Bonanza program allows more flexibility to make payments to legally responsible relatives. In addition, because consumers can set their own pay rates, workers can informally make an acknowledgement of the many costs involved with driving to remote areas, which will hopefully help with retention.
With the Native American outreach, we discovered that our previously designed programs did not cover many health services they requested. The new grant was painted broadly enough to meet the needs by including such things as Native Healers, sweat lodges and other culturally relevant services into a care plan.
There are still challenges to providing non-traditional services, for instance working out payment methods for services which are often traded for rather than directly reimbursed. The grant provides us with the opportunity to explore and address these barriers.
Overall, Independence Plus has been a blessing that gives the consumers more say about what will work for them given their unique environments in terms of their geographic area and cultural background.
Q. Your program "Big Sky Bonanza" has developed a number of great tools like an Orientation Manual and Support Services Spending Plan. In what ways did you involve consumers and make them the focus?
A. The process started by gathering together focus groups of 5-6 people to walk through the current plan and tear it apart. One of the first pieces of feedback our consumers offered was regarding the Plan of Care documents used in the traditional HCBS waiver. Consumers expressed concerns that the assessment was too medical and that they never saw what was going on in the process. By forming a work group of self advocates, providers, consumers, and attendants, we were able to change the assessment and plan of care development process. The new plan includes changed language, lots of self-reporting, and a new format that lists the goal statement of hopes, dreams and strengths at the top of the plan and moves the medical information to the bottom.
Big Sky Bonanza Waiver Materials
Orientation Manual & My Support Services Plan
A second example happens during the orientation period. We wanted to make sure that consumers knew what the program was all about so we created a twenty page manual. However, the consumers are not the only ones who needed to understand rights and responsibilities associated with consumer direction, so we invite support brokerage and financial manager providers to attend orientations as observers. Allowing these providers to attend the orientations provides them with a view of the consumers as leaders and active participants and provides a framework for their participation in the new program that is consumer focused and consumer driven.
Q. One could easily drive 350 miles and over multiple mountain passes to cross your state, how did you choose to deliver trainings in such a geographically disperse state?
Name of Grantee: Colorado Department of Health Care Policy and Financing
Date Awarded: 2003
A. Colorado recently completed five statewide regional trainings. Because the target audience was Medicaid clients,
the section’s statistical analyst pulled location data by county for all HCBS waiver clients who received attendant support. The data showed where clients grouped throughout the state. Training locations were selected from these groupings. Four Department staff and one peer trainer attended all the trainings. Additional peer trainers and Department staff joined various trainings along the way.
The topics chosen for the trainings were determined by the peer trainers and advisory committee. The workshop sessions titled, “How to Find Quality Attendant Support/Planning for Emergencies” and “Benefits and Responsibilities” were presented by peer trainers. The workshop sessions titled, “Case Manager’s Role” and “Transitioning Kids” were presented by Department staff. Staff and peer trainers first traveled along the front-range to Pueblo and Fort Collins. The following week we crossed many mountain passes traveling to the western slope to Grand Junction and Durango before returning to Denver. The distance traveled was 1175 miles.
Peers as Trainers
Q. In Colorado, a number of Real Choice Grants worked together to achieve greater systems change, one example being the collaboration among IP and C-PASS programs. How did you recruit peer trainers and how do you plan to sustain their work?
A. Colorado's COmPASS grant uses Peer Trainers (PT) to support the consumer direction initiatives in Colorado Medicaid. Each Consumer Directed Attendant Support (CDAS) applicant is required to complete an intensive training prior to enrollment in CDAS. During these trainings the COmPASS Training Coordinator (TC) identifies potential peer trainers based upon effective interaction with other trainers and participants. The TC invites potential PT to apply to be a part of the peer trainer network. Once an application is received, the candidate is interviewed by the Training Coordinator, COmPASS Grant Administrator and, if available, the CDAS Administrator. The TC determines the focus of the interview based on perceived strengths and weaknesses of the candidate as exhibited at the CDAS training session. Because advocates for disabled consumers are naturally drawn to the role of PT, the interview includes questions to reveal the applicant's ability to differentiate and build a fire-wall between the sometimes conflicting roles of an advocate and that of a trainer in a state Medicaid program. We also ask the applicants to conduct a short training about one facet of the CDAS training curriculum. The PT use a well-developed curriculum and assist in evaluating that curriculum.
The Department collaborated with a Colorado foundation that secured valuable assistance for development of the peer training sustainability plan. Also, the Department sought the input of consumers, peer trainers, and members of the advisory committee for this project. When complete, the COmPASS grant's sustainability plan will provide a blueprint for the community's implementation of the plan, preserve the integrity of the training system and maintain accountability back to the Department. The developer and supporters of the plan foresee revenue streams rising from identified markets for additional plan services, thus providing sustainable resources for the peer-trainer network. This sustainability plan takes the form of a business plan for a 501(c)3 non-profit corporation with market analysis for each revenue stream that is envisioned. A marketing plan will identify potential secondary and tertiary markets for plan services. Cost projections include typical 501(c)3 set-up, initial branding, advertising, marketing, and evaluation activities. The plan identifies sources of initial funding to support the non-profit through start-up and other initial financial obligations. An existing 501(c)3 organization agreed to house the new non-profit under pre-existing non-profit status. The peer training sustainability plan will include grant templates amenable to the sources of initial funding. The structural plan for the organization seeks consumer participation in non-profit operations, management, and direction.
Improving Emergency Backup
Q. One of the goals of your grant was to develop training mechanisms for critical incident management and emergency backup systems. How did you gather recommendations from stakeholders on the definitions?
A. The Department submitted a report to CMS that included recommendations and an implementation plan on emergency backup and critical incident management systems for consumer directed programs. The report incorporates information from key informant interviews, consumer focus groups, and research on other states' practices.
The findings of the report, "Improving Emergency Backup and Critical Incident Management for Consumer Direction," noted that an individualized approach to emergency backup and critical incident management is most appropriate for consumer direction programs. Traditional federal expectations for emergency backup and critical incident management systems are not compatible with the philosophy of consumer direction, in which consumers have choice, control and responsibility for managing attendant services. Consumers do not rely on the agency-based systems for emergency backup or state systems for critical incident management, in part because they have not been designed for consumer direction programs.
Additionally, stakeholders, including Department and other state staff, stressed that state agencies do not have regulatory authority over the attendants hired by consumers. Mechanisms for emergency backup and critical incident management already exist in consumer directed programs which have shown a high level of satisfaction and quality care for consumers. Improvements were made to better support consumers in directing care and addressing emergency backup and critical incidents.
Colorado's Improving Emergency Backup and Critical Incident Management for Consumer Direction
For example, stakeholders and consumers suggested adding to consumer training materials and developing educational brochures for planning emergency backup, preparing for attendant support during a community-wide disaster, determining methods to prevent critical incidents and theft, and preparing information on health care emergency advance directives. These training materials and brochures significantly improve support for consumers in consumer directed programs and contribute to the sustainability of consumer direction initiatives, while maintaining consumer independence, choice and control.
A Sample of Documents on Consumer Direction:
Promoting Self Direction & Consumer Control in HCBS Systems
Consumer Direction Initiatives of FY '01 & '02 Grantees: Progress & Challenges
The Myths and Realities of Consumer-Directed Services for Older Persons
Consumer Direction and Family Caregiving: Results from a National Survey
State Activity Relating to "Individual Budget" Models of LTC for the Elderly
Individual Providers: Guide to Employing Providers Under Participant Direction
Ahead of the Curve: Emerging Trends & Practices in Family Caregiver Support