IDDW - Advisory Commission on Services and Supports
Social Services and Mental Retardation
Proposal to Implement the Recommendations of the Advisory Commission on Services and Supports for Persons with Developmental Disabilities Who do not have Mental Retardation.
October 1, 2002
Patricia A. Wilson-Coker, Commissioner
Department of Social Services
Peter H. O'Meara, Commissioner
Department of Mental Retardation
Response to Section 1 of Special Act No. 02-14:
PROPOSAL TO IMPLEMENT THE RECOMMENDATIONS OF THE ADVISORY COMMISSION ON SERVICES AND SUPPORTS FOR PERSONS WITH DEVELOPMENTAL DISABILITIES ESTABLISHED PURSUANT TO SECTION 17A-215A OF THE GENERAL STATUTE AS AMENDED
Submitted by Connecticut State Departments of
Social Services and Mental Retardation
The Advisory Commission on Services and Supports for Persons with Developmental Disabilities was established by P.A. 00-135 Section 19(a) in response to growing concern about limited access to supports and services in Connecticut for citizens with developmental disabilities other than mental retardation. The Commission, which began meeting in November of 2000, was charged with providing a series of recommendations and advice in four major areas:
- Define the population of people with a developmental disability,
- Identify the types of services and supports they need,
- Identify how such services and supports can be best delivered, and
- Identify the costs of providing these services and supports.
In July 2002, the Commission's final report entitled "Supporting Connecticut's Citizens with Developmental Disabilities: Final Report from the Advisory Commission on Services and Supports for Persons with Developmental Disabilities who do not have Mental Retardation" was submitted to the Commissioner of the Department of Mental Retardation.
Among the Commission's key findings is the notable fact that Connecticut is one of only six states in the U.S. that have a state agency serving only persons with mental retardation.1 In other words, there is no principal state agency that is assigned the role of coordinating or delivering services and supports for persons with developmental disabilities, who do not have mental retardation, and their families. The absence of a single state agency with this responsibility or other method of coordinating services has resulted in a complex, confusing, and fragmented service maze. Moreover, no less than seven separate state agencies or divisions have established eligibility criteria based on diagnostic labels, income limitations, and discrete functional needs. This has led to uneven access to state sponsored services and more importantly, often denies critical support to citizens with substantial need for assistance.2
Based on their research the Commission made a series of 11 recommendations that focus on developing and implementing of a statewide coordinated interagency system of services and supports for persons with developmental disabilities and their families. Appendix A contains a copy the Executive Summary. For a detailed description of the Commission's research processes, findings, and the 11 recommendations, the reader is referred to the Commission's final report.
1. About 40 of the 50 states have moved toward the establishment of a single state agency that serves people with developmental disabilities beyond just those with mental retardation. Only Connecticut, Massachusetts, Pennsylvania, Virginia, Alabama and Mississippi have a state agency that only serves people with mental retardation.
2. For example, an individual with an autism spectrum disorder who has significant need for support in activities of daily living can receive relatively comprehensive services from DMR if his/her IQ is less than 70; but may be only eligible for time-limited vocational support from BRS if his/her IQ is a few points higher.
The Connecticut State Departments of Social Services (DSS) and Mental Retardation (DMR) have carefully reviewed the Commission's final report and are acutely aware of two diametrically opposed facts. First, current budget constraints and economic trends provide significant and real barriers to funding the development of the infrastructure and supports needed to serve Connecticut citizens with developmental disabilities who do not have mental retardation as specifically recommended by the Commission. Second and equally important, the Commission, through its research, clearly documented that there are individuals with developmental disabilities who need assistance now and who, for a variety of reasons, do not meet eligibility criteria for existing state funded or provided services.
Added to this is the reality that persons with developmental disabilities who are eligible for existing state funded or operated services find the bureaucratic maze near impossible to negotiate. While needed services may be available, it is challenging at best to identify them. As one individual from a Commission focus group noted "information and services are almost impossible to find; people experience the run around, dead ends, call here . . . and call there".
The need for integrating information about and coordinating access to services and supports on both the state and local level has been duly noted by the Commission and elsewhere-the Connecticut Community Options Task Force and the Connecticut Long-Term Care Planning Committee. Moreover, these groups and others have identified a lack of coordination between state and local service systems and wide variations in implementation of state funded or provided services at the local level.
DSS and DMR believe, therefore, that the exigent challenge is to identify short-term strategies focused on doing more with the resources on hand while improving upon the existing state and local infrastructure. Vital to the accomplishment of these tasks and as noted in the Commission's guiding principles, will be the development of broad partnerships at both the state- and local- level. These partnerships must include individuals, family members, public agencies, and private providers.
To that end, we propose developing, implementing, and evaluating a model demonstration project (i.e., a pilot) in one locale (i.e., city or town and surrounding service area) whereby existing, state funded and provided services are purposefully coordinated within and across agencies and levels (state and local). Specifically, the proposed model would concentrate its efforts on individuals who meet the federal definition of developmental disability and who are or may be eligible for current state funded services and supports. The project's aims are coordination of existing programs, grants (e.g., Real Choice Systems Change Grant), and other initiatives at both the state- and local-level and identification of evidenced based practices for supporting future system development.
All strategies under this proposal would be framed by the Commission's Guiding Principles and Future Vision and linked to the Commission's 11 recommendations (see Appendix A). Moreover, they would be designed to be sensitive to the current context, highlighting implementation strategies that cross single agency lines and state and local boundaries, while requiring minimal or no investment of new state funding.
While this proposal would not fill the service gaps identified through the Commission's research, it would begin to address issues of coordinated information and access and service quality for those individuals with developmental disabilities who meet current eligibility criteria for existing state funded or provided services.
Leadership and Structure
Key to bringing about the needed systemic changes, as identified by the Commission and others (e.g., The Connecticut Community Options Task Force, The Connecticut Long-Term Care Planning Committee), is the establishment of an Interagency Developmental Disabilities Workgroup (IDDW). This workgroup would be formed to ensure the development of an interagency infrastructure, while being responsive to participating agency mandates and practices. It is recommended that the IDDW be comprised of appointees from DMR; DSS, including the Bureau of Rehabilitation Services (BRS), Board of Education Services for the Blind (BESB), Commission on the Deaf and Hearing Impaired (CDHI); the Council on Developmental Disabilities; the Department of Children and Families; the Department of Mental Health and Addiction Services (DMHAS); the Department of Public Health (DPH), the Office of Policy and Management (OPM); the Office of Protection and Advocacy for Persons with Disabilities (OPA); and the State Department of Education (SDE). At a minimum, collaborating agencies would make a two-year commitment to staffing the IDDW.
Personnel may be designated to serve on the IDDW from either an agency's central or regional office. Ideally, the staff appointed to the IDDW would be senior level consultants or program managers whose collective knowledge and skills included developmental disabilities, systems design (state and local), and interagency collaboration.
Proposed Project Activities
As noted above, we are proposing the development, implementation, and evaluation of a model demonstration project (i.e., a pilot) in one locale (i.e., city or town and surrounding service area) whereby existing, state funded and provided services are purposefully coordinated within and across agencies and levels (state and local). All project goals and activities should embody the Commissions' Guiding Principles and Future Vision and be linked in substance to the Commission's 11 recommendations. Strategies should be designed to focus on the person and family across the lifespan, promote choice and control, and advance shared responsibility between and among the state and local level; public and private providers; and the individual, family, and community. A major outcome of the demonstration project should be the development of a locally driven and supported model of services and supports that is built upon evidenced based best practices.
The IDDW would be expected to develop a detailed project management plan, including outcomes, tasks, timelines, responsible person(s), and a plan for formative and summative evaluation of the project implementation. Moreover and as stated earlier, the project management plan should specify in detail where and how the IDDW will link with other statewide grants and initiatives, including but not limited to the Real Choice Systems Change Grant, the Nursing Facility Transition Grant, the Connecticut Long-Term Care Planning Committee, and statewide Olmstead planning.
While proposed activities can be grouped into two major areas -- coordination of existing state funded or provided services at both the state- and local-level; and enhancement of local capacity to support persons with developmental disabilities across the lifespan -- nearly all the activities will span the levels and will be implemented within the context of the model demonstration and a single locale (i.e., city or town and surrounding service area).
Coordinate existing state funded or provided resources, programs, and services at both the state- and local-level.
- Draw on existing advisory bodies related to disability issues to guide and assist the Interagency Developmental Disability Workgroup (IDDW), emphasizing direct linkages to Connecticut communities and involvement of consumers, family members, and providers.
- Identify current policy barriers to serving persons with developmental disabilities and their families.
- Identify public policies that promote cost-sharing mechanisms including individual and parental asset and resource contributions (e.g., sliding fee scale) and that encourage ongoing family contributions to the support of their family member.
- Develop processes for identifying individuals with a developmental disability who are currently receiving services from state agencies and/or private agencies using state funds.
- Analyze existing agency budgets and identify funds that are used to support people with developmental disabilities.
- Identify opportunities for cross agency training, focusing on agency eligibility and services and specialized skill development in identified areas of competency as they relate to persons with developmental disabilities (e.g., positive behavioral support for persons with autism spectrum disorders).
- Coordinate where possible the recruitment of qualified personnel across all agencies, using existing infrastructures such as CT Health Jobs.
Enhance local capacity to meet the needs of individuals with developmental disabilities across the lifespan.
- Select a locale for implementation of the model (i.e., city or town and surrounding area).
- Identify key individuals (i.e., local public and private partners) who can provide connections to locally-based resources or expertise.
- Identify existing and needed supports and resources at the local level (e.g., recreation, housing, transportation, consultants).
- Delineate strategies for filling local service gaps.
- Delineate partner roles and assign responsibilities, developing formal agreements where needed.
- Evaluate outcomes and identify evidenced based best practices.
While economic and practical considerations preclude implementation of the Commission's recommendations at this point in time, there are some first steps that Connecticut can take now. We can begin by dedicating resources (i.e., personnel) to improving the existing state-level infrastructure, including information about and access to existing state funded or provided services and supports. Second, we can identify strategies and effective practices that have the potential to enhance the capacity of Connecticut cities and towns in meeting the multiple and complex needs of persons with developmental disabilities and their families.
Nevertheless, without a major shift in Connecticut public policy and an infusion of substantial new resources, there will remain a cohort of individuals with developmental disabilities who do not have mental retardation who need assistance now and who, for a variety of reasons, do not meet current eligibility criteria for existing state funded or provided services.
Executive Summary (PDF, 297 KB)
Note: The document presented here requires the FREE Adobe Acrobat™ Reader 5.0. To obtain the document in an alternate format, please contact:
Department of Mental Retardation
460 Capitol Avenue
Hartford, CT 06106
Phone: 860-418-6132 Fax: 860-418-6003