Real Choice Systems Change COMMONWEALTH OF N. MARIANA ISLANDS Identified Problems with the State's Long-Term Care System Lack of data on the incidence of disabilities and long-term illnesses. The Commonwealth lacks home and community services. There are no HCBS waiver programs, no residential care for individuals with mental illness, and no direct services for individuals with developmental disabilities. Federally imposed capitation on Medicaid funds and statutory matching rate of 50 percent contributes to the lack of services. A limited number of voluntary organizations offering family supports and a lack of family support organization to address the needs of families. Problems with recruiting and retaining qualified personnel, particularly special education teachers, psychologists, physical, occupational and speech therapists, interpreters and other specialized medical disciplines. CNMI residents encounter major barriers in employing personal assistance workers from abroad due to CNMI immigration and labor policy, which sets high income thresholds that most persons who need specialist care cannot afford to pay. There is also no domestic job category that specifically describes the duties of a personal care attendant. Lack of private, for-profit personal assistance service (PAS) providers and only one private, non-profit PAS provider that work with persons with disabilities. Due to lack of services, people who need services have to seek them off-island. Once off-island, they often lack family support due to inability to pay for air tickets. Individuals not sent off-island for services are housed in disparate, isolated, family homes and the care provided is of widely varying quality. Parts to repair specialized equipment for persons with disabilities can take weeks or months to obtain. Perceived Strengths CNMI has a Council on Developmental Disabilities, the University Centers for Excellence at Northern Marianas College, the Northern Marianas Protection and Advocacy Systems, Inc., the Office of Vocational Rehabilitation Services and Special Education Services. We are developing mental health policy to address the needs of children and families. A recently constructed transition living center (TLC) provides independent living skills training and vocational rehabilitation services to enable persons with mental disabilities residing in a psychiatric ward to transition to community living and employment. Parents of Children with Autism, a recently organized group, has begun a campaign to gain community support for improved services. Primary Focus of Grant Activities Establish three island centers to serve a diverse target population of people with disabilities and facilitate their integration with the larger community. Devise and demonstrate a model personal assistance services project. Develop local capacity for personal assistance services through education and training. Provide technical assistance for improvements in personal assistance services. Develop data collection and analysis capability. Goals, Objectives, and Activities Overall Goal. Expand CNMI long-term care capacities, directed by consumers and innovative partnerships for systems change, and develop consumer access to, and control of, personal assistance services. Goal. Enable individuals with disabilities of all ages to live in integrated community settings appropriate to their individual support requirements and preferences. Objectives/Activities Establish community learning center and after-school summer program for students and youth with disabilities to provide organized leisure activities integrated with their peer groups. Support existing groups, such as the Center for Independent Living, and establish other peer support groups, such as adults, students and families, to implement advocacy activities. Establish one-stop resource information center to provide a venue for different kinds of agencies and to provide information, application forms, brochures, access to data, hotlines and other services. Provide special services for transitioning consumers to the community after discharge from hospitals and mental health wards, including support for the families. Goal. Create local capacity for personal assistant services through training and certification. Objectives/Activities Develop and implement education and training, including an assistive care certificate curriculum, targeted to family caregivers and other local job-seekers to increase the local capacity to provide services, to be sustained after the grant through payment of fees. Create eight PAS positions as a pilot project, and develop a fee-for-service structure to sustain and expand PAS after the grant period. Goal. Develop a consumer-driven body which will have legal authority to advocate for services improvements through the legislature. Objectives/Activities Provide training for consumers, service providers and professionals for systems change initiatives. Increase the number of self-advocates, and increase consumer control and consumer choice through participation in the Self-Advocacy-Partners in Policy Making Project. Provide ADA Technical Assistance to educate consumers and family members about their rights. Goal. Increase access to assistive technology devices and provide training for consumers and service providers. Objectives/Activities Support a rotating 6–week lending program and augment the existing Assistive Technology demonstration facility by requisitioning additional equipment. Develop an Independent Living Transitional Accessible Model Home Facility to serve as a demonstration and transitional center and a site for training in independent living skills for the DD population and people with other disabilities. Goal. Promote positive change in individuals with disabilities and their families by improving physical, economic and social conditions. Objectives/Activities Conduct needs assessment surveys and recommend accessible transportation services that will support community living. Purchase three accessible vans: one van to Saipan to expand existing service and the other two to the islands of Rota and Tinian to commence a public transportation program to provide services to people with disabilities and the elderly. Facilitate procedures with Department of Labor and Immigration to hire nonresident workers as personal assistants. Goal. Increase access to, expansion and improvement of social services and supports, economic development, community planning, and organization to enable individuals with disabilities and those with long-term illnesses to obtain access to adult education, job training, and quality of life activities. Objectives/Activities Provide training for architects to achieve more ADA compliant residential and public and buildings. Develop a data collection and analysis capability to document the size and conditions of the disability community, direct attention to relevant issues of community concern, justify resource allocation, and improve the focus of service programs. Provide after-school program for remedial skills training. Key Activities and Products Implement centers on three islands to function as venues for coordination and delivery of PAS. Each island will designate stand-alone facilities for dedicated center use. Establish a community governance initiative supporting comprehensive systems change. Design and implement a model PAS project with a sustainable fee-for-service structure. Develop and implement PAS education and training to meet demand and address personnel shortages. Collect and analyze data on the CNMI population with disabilities or long-term illness. Consumer Partners The Consumer Task Force for Systems Change comprises 12 primary and secondary consumers, including representatives from Saipan, Tinian, and Rota Parent Organization also known as STARPO (formerly Parents Association of Children with Autism). Consumer Partners and Consumer Involvement in Planning Activities The Consumer Task Force organized and undertook a needs assessment process with service provider agency participation and support. The process took place over 21 days and culminated in the 3–year grant workplan. The Task Force determined appropriate budget allocations for each activity, and identified in-kind support exceeding $400,000. The consumers alone determined service priorities for each grant project. Consumer Partners and Consumer Involvement in Implementation Activities The Task Force will be responsible for program implementation either directly or through contractual partnerships, and will operate as the core leader of a community governance initiative involving the CNMI disabilities community. The Task Force will participate in and/or direct: Supervision and evaluation of work done on its behalf by subcontractors. Program demonstrations and projects. Public Partners Assistive Technology Project. Department of Labor and Immigration. Governor's Office. Medicaid Office. Office of Vocational Rehabilitation. Northern Marianas College (NMC)—University Center for Excellence (UCE). Children's Developmental Assistance Center. Public School System Special Education and Head Start. Office of the Mayor. Office on Aging. Community Guidance Center—Transition Living Center. Northern Marianas Housing Corporation. Private Partners and Subcontractors Center for Independent Living. Saipan Call-a-Ride. AssistGuide, Inc. Northern Islands Company. Public and Private Partnership Development/Involvement in the Planning Phase Public Public School System Special Education and Head Start, Children's Developmental Assistance Center, the Medicaid Office, the Office of Vocational Rehabilitation, Northern Marianas College University Center for Excellence and the Office of the Mayor organized and undertook a needs assessment process with the Consumer Task Force. The public partners identified technical issues pertaining to infrastructure needs, barriers and model approaches. Private Saipan Call-a-Ride undertook a needs assessment process with the Public Partners and the Consumer Task Force. Northern Islands Company, a consultant, was subcontracted to write the grant application. Public and Private Partnership Development/Involvement in Implementation Public Office of Aging will be involved with the creation of the one-stop information and referral centers on Tinian Island and Rota Island. Northern Marianas College will provide direct technical assistance to each island center. NMC will develop and implement education and training services to increase the local capacity to provide services. NMC-UCE will develop a data collection and analysis capability to document the size and conditions of the disabilities community, direct attention to relevant issues of community concern, justify resource allocation, and improve the focus of service programs. The Department of Labor and Immigration will facilitate the employment of nonresident workers to provide PAS. Northern Marianas Housing Corporation will provide training on accessible housing. Private AssistGuide, Inc. will collaborate with NMC-UCE to develop a data collection and analysis capability. The Center for Independent Living will operate, manage and assist with training in independent living skills at the future Independent Living Transitional Model Home Facility. Existing Partnerships That Will Be Utilized to Leverage or Support Project Activities Under the Real Choice Grant, the existing CNMI Council on Developmental Disabilities' Assistive Technology Project will expand its activities and play a major role in assisting with the design and purchase of assistive technology devices for accessible homes to be housed at the Independent Living Transitional Model Home Facility, and provide assistive devices for limited-term use through an inter-island equipment lending program. Oversight/Advisory Committee The Consumer Task Force will direct and evaluate subcontractor work products, progress and outcomes, and interface with the lead agency, the CNMI Council on Developmental Disabilities. Formative Learning and Evaluation Activities The basic approach is a check and balance system, which will incorporate the time frames, milestones, expected outcomes for each partnership, adaptive measures to make program adjustments, and consequences of inadequate performance. The Task Force will evaluate and report on the work of the contractual partners in a formative learning process, primarily using quarterly consumer satisfaction surveys with progress reporting by the subcontractor partnerships. The service provider agencies affiliated with the Task Force will evaluate Task Force performance in governance, the three centers, demonstration projects and subcontractors work components of the program. This internal cross-assessment process will enable the recognition of problems and provide a regular forum to address solutions, program refinements and substantive changes throughout the grant program period. Evidence of Enduring Change/Sustainability The creation of physical locations (the island centers) where agencies and consumers can meet together as a community will encourage consumers to take active roles in obtaining services and directing improvements in the social services network of the community. The island centers will provide both a venue and coordination of services for providers which will be self-sustaining. Capacity development will include the development of an assistive care certificate curriculum that can be used after the grant period ends. The first-time availability of services resulting from the Real Choice Grant program will demonstrate significant cost savings over the current practice of obtaining services outside the CNMI, and represents fundamental systems change. The basic CNMI Medicaid program changes underway will provide coverage for on-island home health care for the first time. Sources of funding for PAS will include MAP and possibly a waiver, which is now being considered. Medicare would pay for home care services as well as assistive technology equipment/durable medical equipment. Representations to Congress to remove the federal Medicaid services cap and adjust the statutory matching rate from 50 percent to 77 percent, if successful, will result in more funding for home health care and PAS. Geographic Focus CNMI-wide.