Real Choice Systems Change
Identified Problems with the State's Long-Term Care System
- Lack of a comprehensive and coordinated system of information regarding services and supports at both the state and community level.
- Providers need training, technical assistance and support to foster self-determination through consumer-driven best practices.
- Lack of interagency coordination.
- Critical shortage of personal assistants to support individuals with disabilities.
- The existing system is not responsive to the needs of consumers or their families.
- In some cases it is easier for individuals to qualify for Medicaid coverage in a nursing facility than it is to get care at home.
- The state has given little attention to the interaction and interdependency between state policy and programs and the less formal network of systems at the community level.
- In response to the Olmstead Supreme Court decision, the state developed a comprehensive community integration plan, spearheaded by a Community Options Task Force comprising individuals with disabilities and family members. There is strong consumer involvement in long-term care policy development.
- The state has a Long-Term Care Planning Committee addressing the needs of all individuals who need long-term care, regardless of age or diagnosis.
- Some state policy makers are committed to enhancing and expanding community service options for all persons with disabilities, regardless of diagnosis or age.
- The state is using a comprehensive planning approach to increase options for individuals with disabilities to live in more integrated community settings.
- The state has many groundbreaking initiatives that support individuals with disabilities across the life span. Federal, state and local policymakers and grants are targeting areas for system change, including transition, employment and mental health services.
Primary Focus of Grant Activities
- Improve access to and understanding of the long-term support system.
- Provide training to influence agencies to give individuals more choices.
- Create a strategy to build a workforce to meet the demand for quality home care support.
- Demonstrate models of support for opportunities and choices in three communities.
Goals, Objectives, and Activities
Overall Goal. Build the capacity to support informed decision making, independent living, and a meaningful quality of life for persons with disabilities across their lifespan.
Goal. Assess the extent to which persons with disabilities are able to receive an inclusive education, participate in community life, seek and obtain employment and housing, and generally access the supports and services they need in a manner that enhances their fullest community participation and independence.
- Develop surveys and other methods of data collection to learn how persons with disabilities and their families access the full range of services they need to live in the community.
- Explore existing sources of current information regarding accessibility and inclusion, including surveys and studies from state and other entities such as the Department of Education, the Office of Protection and Advocacy, and the Council on Developmental Disabilities.
- Produce reports based on data collection activities, summarizing the opportunities and barriers experienced by persons with disabilities and their families across the state.
- Develop an inventory of public and private agencies and resources that are promoting the shift towards decision making, inclusion, and independence for persons with disabilities. The inventory will be broken down by community/town and periodically updated.
- Distribute the inventory to human service organizations for general information and referral.
Goal. Facilitate the development of an expanded workforce to meet the needs of persons with disabilities in Connecticut.
- Collaborate with the Connect to Work Grant (Medicaid Infrastructure Grant) and the Connecticut Association of Personal Assistants (CTAPA) in their efforts to increase the work force of personal assistants.
- Develop recruitment and outreach materials for use in high schools, community colleges and other educational venues, and recruit workers from various employment programs.
Goal. Enhance the capacity of state agencies to provide services by including persons with disabilities and their families as partners and decision makers in service design and delivery.
- Design and develop print and video materials to train state agency employees and policy makers on consumer-driven best practices.
- Provide technical assistance to state agencies to help them incorporate training information, materials, and activities within state agency orientation and training, and collaborate with training coordinators on revising existing training systems.
- Sponsor forums for state legislators on the current status of services and supports for persons with disabilities relative to national trends and ongoing state needs, and provide information on the need to increase consumer choice and decision-making in all aspects of service design and delivery.
Goal. Develop and disseminate information and resources for the general public on the Real Choice Systems Change Grant, and increase public awareness of inclusion in the community.
- Seek opportunities to disseminate information about grant activities, values, and goals to local newspapers and other publications.
- Develop handouts or question-and-answer sheets addressed to the general public as the need for education is identified on specific topics (e.g., accessible housing, inclusive schools, independent living).
- Develop a media tool kit for persons interested in advocating within their own communities or statewide, including concise information about the Olmstead case and other legal milestones, sample "letters to the editor," and phone listings for agency, legislative, and other contacts.
- Develop a training module targeted at local professionals including attorneys, teachers, doctors, employers, social workers, dentists, and hospital discharge planners.
- Develop and maintain an interactive, accessible Website on project activities and findings to provide an inventory of identified resources at the state and community level.
Goal. Assist three communities in Connecticut to become models of support for opportunities and choices for persons with disabilities across their lifespan.
- Assess areas of need in each selected community, in part through the conduct of focus groups of community members who have disabilities to identify specific barriers in their community.
- Develop a community action plan.
- Facilitate expansion of the present workforce of paraprofessional support staff in the model communities. The model communities will serve as a testing ground for the statewide workforce development effort.
- Develop peer support networks in each of the model communities.
- Provide targeted training to disseminate information and resources to community leaders and other community members. Training will be conducted using a variety of formats, including workshops, long-term seminars, Web-enhanced instruction, and teleconferencing.
Key Activities and Products
- Collaborate with the Connect to Work Grant (Medicaid Infrastructure Grant) and CTAPA in their efforts to increase the work force of personal assistants.
- Work with state agencies to enhance their capacity to provide services by including persons with disabilities and their families as partners and decision makers in service design and delivery.
- Develop training materials and provide technical assistance to state agencies regarding embedding the training information, materials, and activities within state agency orientation and training.
- Collaborate with training coordinators on revising existing training systems.
- Develop and disseminate information and resources for the general public on the Real Choice System Change Grant, including handouts or question-and-answer sheets, a media tool kit for persons interested in advocating within their own communities or statewide, and an interactive, accessible Website on project activities and findings.
- The Olmstead Coalition, a group formed in response to the Olmstead Supreme Court decision, comprises members from Connecticut's disability and family support communities.
- The members of the Community Options Task Force, comprising individuals with disabilities and family members, formed the base of the Real Choice Task Force and other individuals were added to assure a broad and diverse representation.
- A Steering Committee made up of many of these same individuals will act as the governing body for the duration of this grant. At least 51 percent of the Steering Committee will be composed of persons with disabilities, family members, and advocates, representing Connecticut's disability community.
Consumer Partners and Consumer Involvement in Planning Activities
In preparing the grant application, consumers, private and public partners had similar roles and responsibilities, including identifying problems, developing solutions, and writing and editing drafts.
- In collaboration with several other partnering organizations, the Olmstead Coalition hosted an all-day forum for 140 participants to identify issues to be addressed in Connecticut's Real Choice Systems Change Grant applications. The group represented state- and local-level agencies; integrated community service providers; consumers, including those presently living in nursing facilities; and parents of children with disabilities. Seventeen focus groups were held, composed primarily of consumers, family members and advocates. The common themes identified by these focus groups are the foundation of this application.
- The Real Choice Task Force worked with the state agencies in the development of this grant application. A process was developed to maximize consumer participation throughout the development and writing of the application. Small workgroups were formed to draft and review projects. Large group meetings were held and consensus was reached on all aspects of this application.
- The Real Choice Task Force held an outreach meeting to obtain input from minority communities about issues for persons with disabilities.
Consumer Partners and Consumer Involvement in Implementation Activities
- The Real Choice Task Force will retain a leadership position and will appoint members to the Steering Committee, which will have decision-making authority. The Steering Committee will work in collaboration with the University of Connecticut's A.J. Pappanikou Center for Excellence (UCE), the Independent Living Centers, and Co-op Initiatives.
- Workgroups will include the expertise of public and private partners as well as experienced consumers to assure that the most knowledgeable team is created: a team respecting and valuing the various perspectives of experts in the state system, experts in the private network, and experts who have real life experience using both.
- The conference structure proposed in this grant is one example of outreach to assure a broad base of feedback and involvement, hosted by the Steering Committee and the Task Force. The conference will assure that the state obtains real-world information from people who rely on long-term support services, and encourage a broad base of consumer involvement in all aspects of the service delivery system. It will also provide a forum beyond the workgroups involved in the actual development of the projects for extended involvement and input of a broad base of public and private partners.
- A review panel to select the three model communities will include members of the Real Choice Steering Committee, as well as other representatives as needed, such as city or town government representatives.
- Each selected model community will assess areas of need, in part through the conduct of focus groups of community members who have disabilities, asking them to identify the specific barriers in their communities.
- ADA Coordinators.
- Area Agency on Aging.
- Commission on Aging.
- Connecticut Council on Developmental Disabilities.
- Department of Transportation.
- Department of Labor.
- Department of Mental Retardation.
- Long Term Care Advisory Council.
- Long Term Care Ombudsman Program.
- The Office of Policy and Management.
- Office of Protection and Advocacy.
- University of Connecticut's Center on Aging.
- University of Connecticut's A.J. Pappanikou Center for Excellence in Developmental Disabilities Education, Research, and Service (UCE).
Private Partners and Subcontractors
- American Association of Retired Persons (AARP).
- Connecticut Association of Centers for Independent Living.
- Connect-to-Work Center.
- Nursing Facility Transition Grant Steering Committee.
Public and Private Partnership Development/Involvement in the Planning Phase
- In preparing the grant application, consumers, private and public partners had similar roles and responsibilities including identifying problems, developing solutions, and writing and editing drafts. Partnership involvement is described above in the section on Consumer Involvement.
- The grant application was developed with input from all state agency partners.
Public and Private Partnership Development/Involvement in Implementation
- Collaborate with town planning officials, local building planners, realtors and others to increase the availability of affordable, accessible and safe housing in the model communities.
- Collaborate with Connect to Work and Nursing Facility Transition staff to ensure coordination of resource utilization across the projects and avoid duplication of efforts.
- Build collaborative partnerships between the communities and state agencies and organizations to assist with implementation.
- The Steering Committee, which includes private an public partners, will meet monthly to guide the project's implementation. Individual activities within the grant will be designed, implemented and evaluated in conjunction with the Steering Committee and workgroups comprised of Steering Committee members and representatives from Connecticut's disability community, including providers, organizations and advocacy groups.
- Groups, including the Long-Term Care Advisory Council, the Office of Protection and Advocacy, and AARP, have offered to assist with the Website development and design. The Office of Policy and Management is the host of the Website.
- The selected communities' task force will include consumers, families, and representatives of the public sector, and the private for-profit and non-profit sector.
- The project will be subcontracted to, and managed by, the University of Connecticut's A.J. Pappanikou Center for Excellence in Developmental Disabilities Education, Research, and Service (UCE). This center (formerly the University Affiliated Program) will supply the fiscal and administrative infrastructure for all project activities.
Existing Partnerships That Will Be Utilized to Leverage or Support Project Activities
- The work of the Community Options Task Force, convened to collaborate with Department of Social Services and the Long-Term Care Planning Committee on the design and development of the state's Community Integration Plan, will be linked to grant activities.
- An advocacy project of the Council on Developmental Disabilities (the Council) increases awareness of state legislators and other key people about the need for policy change. The advocacy project will address policy change initiatives which support grant activities. The link with the Council and their community integration projects provided an organizational framework which created a springboard for this grant.
- Grant activities will build on existing volunteer networks.
- The State Independent Living Council hired a public relations firm to develop a marketing plan to raise awareness of successful community integration. This activity will be planned in coordination with grant activities related to workforce development to maximize the impact of the marketing plan and resources.
- Co-op Initiatives will continue the Accessible Housing Registry to catalogue and make available information on accessible units around the state. The work of this group will be linked to the grant's housing activities.
- Members of the Real Choice Task Force, which was put in place to develop Connecticut's initial Real Choice Grant application, and other consumers and entities who are available and appropriate, will serve on the Steering Committee. The Committee will be composed of fifteen members; at least 51 percent will be persons with disabilities, advocates, and/or family members, with the rest of the members coming from state agencies.
- The Steering Committee will provide leadership, oversee grant activities and coordinate efforts among other grants and state community integration projects.
Formative Learning and Evaluation Activities
- The key staff of the project will formally monitor all objectives and activities on a monthly basis. Modification of the project's plan of operation will occur as needed.
- The Project Director and Steering Committee will review the success with which the project has met its objectives on a quarterly basis.
- Because a major focus of the project is on the implementation of model communities, case study methodology will also be used to gather qualitative information from families, persons with disabilities, and others who participate in the project.
- An Evaluation Coordinator will oversee all evaluation activities, both formative and summative, as well as research conducted on project activities, including the case studies.
Evidence of Enduring Change/Sustainability
- The Commission on Aging has indicated a willingness to host the Website on project activities and findings, thereby ensuring sustainability of the site, and the opportunity to build further partnerships with foundations, corporations and community organizations.
- The state will continue to work with communities that put together applications for "Model Community Development" but were not selected, to assist in the replication of model communities after the grant has ended.
- Targeted professional development will lead to an understanding of the philosophy of Independent Living, Self Determination and Social Role Valorization and will influence decision makers to move away from the current institutional bias in the system.
- Housing pilots demonstrating best practices resulting in new partnerships with developers and lenders will provide more housing for individuals with disabilities within the model communities.
- Plan and coordinate statewide conference to promote awareness of the project and share findings as well as increase public awareness of inclusion in the community. The workforce development initiative is statewide.
- Three model communities.