division of developmental disabilities 2007 — 2011

Illinois Department

of Human Services

DIVISION OF DEVELOPMENTAL DISABILITIES2007 — 2011 STRATEGIC PLAN

Illinois Department of Human Services, Division of Developmental Disabilities Strategic Plan 2007 - 2011

Table of Contents

Acknowledgments ............................................................................... ii

Introduction ....................................................................................... 1

Strategic Leadership Through Partnership............................................... 1

Overview of the Division of Developmental Disabilities.............................. 2

Strategic Policy Statements .................................................................. 2

Developmental Disabilities Service System Values ................................... 3

Developmental Disabilities Service System Guiding Principles .................... 4

Proposed Strategic Imperative .............................................................. 5

Proposed Strategic Goals...................................................................... 5

I. Participant Access ....................................................................... 5

II. Participant-Centered Service Planning and Delivery.......................... 7

III. Provider Capacity and Capabilities ................................................. 9

IV. Participant Safeguards ............................................................... 12

V. Participant Rights and Responsibilities.......................................... 12

VI. Participant Outcomes and Satisfaction .......................................... 13

VII.System Performance.................................................................. 13

Appendix A: Strategic Plan Focus Groups.............................................A-1

Appendix B: Committee Member Lists .................................................B-1

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Acknowledgments

Many people have provided valuable input to make this plan an effective tool for guiding the service delivery system for individuals with developmental disabilities. The needs and preferences of individuals and their families vary widely. The direct experience and knowledge of individuals with developmental disabilities, their families, their providers, State staff and other advocates throughout the system have helped to make this a flexible and inclusive document to meet the changing needs of the service delivery system. The Division acknowledges and expresses its appreciation to the following individuals and organizations: Robin Cooper from the National Association of State Directors of Developmental Disabilities Services, who facilitated the public focus group sessions in the early stages of the process and compiled and summarized the input received. Robin's participation was made possible by funding from the Illinois Council on Developmental Disabilities. The staff at Navigant Consulting, Inc., especially Max Chmura, Andrea Johnson, and Janice Neme, who coordinated so much of the planning process and drafted the written materials. The many self-advocates and advocates who attended the public focus group sessions and provided the basis for the planning process. (See Appendix A for a listing of focus groups.) The Statewide Advisory Council on Developmental Disabilities, which reviewed and commented on drafts of the plan, and will advise the Division on issues regarding its implementation. (See Appendix B for a listing of members.) The Strategic Planning Ad-Hoc Committee of the Statewide Advisory Council on Developmental Disabilities, who advised the Division regarding the early direction of the planning process, reviewed the summary of the focus groups and reviewed early drafts of the plan. (See Appendix B for a listing of members.) The Executive Management Team of the Division of Developmental Disabilities, who provided input from the Administration's perspective on the development of the plan and will be charged with its implementation. (See Appendix B for a listing of members.) All staff of the Division of Developmental Disabilities who provided suggestions for the plan and who continually work to ensure quality services for individuals with developmental disabilities and their families.

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Introduction The Department of Human Services (DHS), Division of Developmental Disabilities (“the Division”) is pleased to present its strategic plan for State fiscal years 2007 through 2011. The 2007 – 2011 Strategic Plan presents the Division’s areas of strategic focus and intent. This document provides a general overview of the Division of Developmental Disabilities; discusses the participation of the community and the Division’s efforts to obtain their ideas for the strategic plan; and finally, presents the Division’s strategic vision, mission and goals for the next five years. Strategic Leadership Through Partnership

The Division of Developmental Disabilities embarked on a bold, new, more inclusive planning process when its previous strategic plan expired in June 2004. The Division committed itself to building a new strategic plan in full partnership with people with developmental disabilities who are touched directly by the system to ensure that the plan draws inspiration from their experiences, insights and ideas. With help from the Illinois Council on Developmental Disabilities, special efforts were made to reach out to people with developmental disabilities and to welcome their ideas in the planning process. The Division actively sought ideas from many other partners, including families, friends, advocates, advisory councils, trade associations, community providers, state-operated developmental center managers and the Division’s own staff. Between October 2004 and January 2006, the Division conducted a broad-based process of gathering ideas and suggestions from literally hundreds of people throughout the State. It began by holding 26 separate “listening sessions” with these stakeholders to gather the initial input for the Division’s Strategic Plan. Over 330 people, many of them

with developmental disabilities, participated in these sessions, which included meetings with the Illinois Council on Developmental Disabilities and the full DDD Statewide Advisory Council. Meetings were held throughout the State, with locations in Chicago and the greater Chicago area, mid-State (Peoria-Springfield) and downstate (Centralia, Swansea and Mt. Vernon). In addition to the input gathered at the meetings, the Division received written input from individuals and groups, including two Network Advisory Committees, the Illinois Advocates for the Developmentally Disabled and members of the Arc of Illinois. Stakeholders clearly felt supported to come forward and were willing to speak freely about their ideas and concerns. They provided many ideas and suggestions for improving the current services system, including service quality and outcomes. The stakeholders were engaged and passionate about improving their own lives and supporting individuals with disabilities. There was considerable concurrence regarding key issues among the participants.

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Using that input as a framework, the Division then embarked on a series of meetings with an “Ad Hoc Committee on Strategic Planning” of its Statewide Advisory Council. This committee included people who have a developmental disability, families, advocates and other major system stakeholders. This group was charged with the task of reviewing and revising the Division’s vision, mission and values statements, as well as outlining initial thinking of the major goals and objectives for the new strategic plan. Concurrently, the Division’s own executive management team began formulating its thinking about the same strategic issues. This team was comprised of the Division’s central office leadership and the Directors of all State- Operated Developmental Centers.


Beginning in March 2005 these two groups worked to develop draft goals and objectives for the strategic plan. These two groups merged in January 2006 to develop the draft strategic plan that was then presented to the Division’s Statewide Advisory Council and discussed throughout the State by its networks. Comments and feedback from participants were considered as part of the drafting of this Strategic Plan. Many of the comments and observations are reflected in the Strategic Plan; however, other comments were more appropriate for the Division’s annual work plan. The Division’s current and future annual work plans will reflect such comments. Overview of the Division of Developmental Disabilities

The Division of Developmental Disabilities has oversight for the Illinois system of programs and services specifically designed for individuals with developmental disabilities. DHS provides direct services to individuals with developmental disabilities and funds community services provided by local agencies. The Division of Developmental Disabilities works as a partner with many local entities statewide to offer an extensive array of services which enable persons with developmental disabilities to reside with their families or in other community living situations, and to develop functional and occupational skills. DHS funds over 340 of these nationally-accredited community service providers in every part of Illinois. The Division has administrative oversight and funds over 300 private Intermediate Care Facilities for Individuals with Developmental Disabilities (ICF/DDs) and Skilled Nursing Facilities for Pediatrics (SNF/Peds). These residential settings in the community provide a continuous program of specialized and generic

training, treatment, health services and related services that is directed toward the acquisition of the behaviors necessary for the individual to function with as much self determination and independence as possible and the prevention or deceleration of regression or loss of current optimal functional status (also known as active treatment). ICF/DDs may also offer nursing care and highly structured programs. The Division of Developmental Disabilities also manages the operations of residential services to individuals with developmental disabilities who reside in nine (9) state-operated developmental centers (SODCs). These developmental centers generally provide residential services to persons with developmental disabilities who have a higher level of need, or to individuals in crisis. In addition, the SODCs provide an array of services and supports to assist individuals to reside in community living environments. All SODCs are nationally accredited. It was noted through community feedback that SODCs provide care and service to the most vulnerable of Illinois' developmentally disabled citizens. Strategic Policy Statements

The Division of Developmental Disabilities’ new strategic plan is built around three basic themes: putting people who have developmental disabilities first; supporting choice; and managing as one system. This strategic plan, while directing the Division’s responsibilities and activities, is intended as a framework for its stewardship of the developmental disabilities services system in Illinois. This stewardship is built on the strength of the Division’s partnerships and collaboration with the many elements of the system that helped forge this strategic plan.

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These themes are reflected in the Division’s proposed Vision and Mission statements. The Division has rewritten its Vision statement as a depiction of the life that it supports for people who have


developmental disabilities. By stating its vision in terms of outcomes consistently expressed by people who have developmental disabilities, the Division implicitly commits its resources to its pursuit. This is a vision that should capture the imagination of all and one that clearly stretches the capabilities of the entire system. The Division has rewritten its Mission statement to broadly define what it does and how it will pursue its vision.

Developmental Disabilities Service System Values

The Division has organizational values that set the tone for its interactions with and support for people who have developmental disabilities. They reflect a set of expectations of people who have developmental disabilities and what they have said is important to them. These values will provide a context for the Division’s policies, program design, and the impact that the supports and services it delivers or manages have on people who have developmental disabilities. These values assume that, as valued members of their families and communities, people who have developmental disabilities have the ability to, with appropriate supports: » Exercise their full civil and human

rights;

» Make informed choices for themselves in determining where and with whom to live, work and socialize;

» Experience continuing personal growth and development throughout their lives;

Mission The Illinois Department of Human Services, Division of Developmental Disabilities provides leadership for and effective management of the design and delivery of quality outcome-based, person-centered services and supports for individuals who have developmental disabilities. These services and supports will be appropriate to their needs, gifts, talents and strengths; accessible; life-spanning; based on informed choice; and monitored to ensure individual progress, quality of life and safety.

» Participate in aspects of community life including home, work, school, and recreation, to the extent that reflects personal choice and capabilities;

» Experience appropriate levels of independence and self-sufficiency;

» Experience a level of personal security that protects them from abuse, neglect and personal or financial exploitation;

» Share strength in relationships with families, friends, co-workers and neighbors;

» Have access to the information they need, in a way they understand, to make informed choices; and

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Vision People who have developmental disabilities are able to enjoy meaningful relationships with family, friends and others in their lives; to experience personal growth and development; and to fully participate in activities of their choice in communities of their choice.


» Participate in decisions that guide the

future of the service and support system.

Developmental Disabilities Service System Guiding Principles

The Division has guiding principles that govern its interactions with and support for people who have developmental disabilities. These guiding principles will be reflected in the actions of its entire staff. They will also create a foundation for the Division’s expectations of the actions of all people who are involved in providing supports or services to people who have developmental disabilities. » We will treat people with respect and

dignity.

» We will be responsible and easily accessible.

» We will be consistent, fair and efficient.

» We will work cooperatively with people or groups who are part of the service system, including individuals who have developmental disabilities, families, service providers, policy makers and other advocates.

» We will formally and informally gather information from people who have developmental disabilities and their families and other system stakeholders, and use this information to guide policy and operational decisions.

» We will promote self-sufficiency and independence for people who have developmental disabilities.

» We will provide opportunities for individuals to make choices, including but not limited to, where and with whom they live.

» We will ensure the services are provided in the least restrictive settings that are consistent with personal choice and appropriate to the needs of the person with a developmental disability.

» We will work with family, friends and neighbors to enhance community support, acceptance, and integration.

» We will ensure the quality of supports and services through the effective oversight and monitoring of supports and services that include consumer and family input.

» We will provide supports and services that are consistent with evidence-based best practices in the field of developmental disabilities and direct and support the development of new quality services or service paradigms.

» We will ensure that services and supports are delivered by a qualified workforce.

» We will actively pursue adequate compensation for the workforce that delivers supports and services.

» We will operate efficiently to provide accountability for taxpayer dollars and maximize the use of federal, State and private funds to support the needs and choices of people who have developmental disabilities.

» We will ensure that information; supports and services are culturally sensitive and culturally competent, respecting diverse needs, preferences and choices.

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» We will provide the leadership that supports exploration and experimentation that is designed to continuously improve the system’s capacity to respond to the choices and needs of people who have developmental disabilities.


Proposed Strategic Imperative The developmental disabilities services system in Illinois is ever changing. To provide effective leadership as this occurs, the Division will embrace the internal changes that are necessary to better target its available resources, to more effectively leverage its expertise and experience, and to nurture and better utilize the partnerships it has developed with the people who have developmental disabilities, their families, advocacy groups, the provider agencies offering supports and services, the workforce, and other stakeholders. The Division will use those partnerships to pursue a stronger financial foundation for the service system that allows Illinois to pursue a position as a national leader in developmental disabilities. It is imperative that the Division, as it sets it strategic course, envisions its responsibilities to people who have developmental disabilities as a single system. A single system where the services provided in the community, through ICF/DDs and through SODCs are viewed as component parts of a single array of services administered by the Division. The goals (proposed) of this strategic plan reflect this imperative. Proposed Strategic Goals The Division’s new Strategic Plan differs significantly from its predecessor. The Strategic Plan presents the Division’s areas of strategic focus and intent. It identifies a strategic portfolio, describing those areas that need priority attention and the basic approaches that will be used. These were developed through dialogue involving over 30 Public Focus Group meetings, the Ad Hoc Committee on Strategic Planning of the Division’s Statewide Advisory Group, the Autism Task Force and the Division’s executive management group, among others. The plan presents the Division’s commitment to strategic initiatives, but does not quantify them or present their attendant objectives and action steps. That level of

detail will be embedded in annual work plans developed by the Division as part of its budget-making process. This approach to managing a strategic portfolio is designed to get commitment to the basic goal areas and needed improvements or actions while allowing the Division to manage its annual strategic activity with a flexibility that recognizes the external forces that often dictate priorities and pace.

I. Participant Access

Desired Outcome: Individuals have access to supports and services in communities of their choice, as determined by the person with a disability. Goal I.1: People who have developmental disabilities and their families, regardless of geographic location, cultural or economic differences, type of need, or level of ability, should be adequately informed of the full range of services that are available and how to access the service system. To achieve this goal the Division will focus on the following primary activities:

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» The Division, in collaboration with appropriate stakeholders, will create and implement a tactical plan that identifies organizations (including the Division) responsible for creating, distributing and maintaining this information, conducting appropriate outreach to underserved communities and populations, and ensures that clear performance expectations are defined and monitored for all involved parties. This may include developing commercials, fliers, brochures and press releases to educate the community about developmental disabilities and available services. Materials may be distributed through schools, churches and newspapers among other outlets;


» The Division will complete an analysis

to determine whether access to services is equitable across disability groups (within developmental disabilities), geographic regions, cultural and economic or other factors, and whether access to the various components of the service system is equitable, [i.e., services in the community, ICF/DDs or SODCs]. Based upon this analysis, the Division will work with appropriate stakeholders and community groups to expand or upgrade available services;

“How do you find out about these things? We only find out by accident.”

» The Division will complete analyses of all current service provider reimbursement rate structures to evaluate whether the rate structure compensates providers for the reasonable cost of providing services to persons with DD;

» The Division will develop curricula that describe the various types of services available in the system and the processes for navigating and acquiring the needed service(s);

» The Division will, in collaboration with stakeholders and in coordination with other cross-disability initiatives, will assure that, regardless of which human service agency a person turns to, he or she will be referred to an appropriate developmental disability agency;

» The Division, in collaboration with appropriate stakeholders, will identify quantifiable performance measures and performance expectations for this goal as part of its initial annual work plan.

Goal I.2: People who need services and are eligible for supports and services but who cannot be immediately served by any component of the developmental

disabilities service system due to funding constraints should be linked to other community resources. To achieve this goal the Division will focus on the following activities: » The Division will work in collaboration

with all stakeholders to develop an increased capacity for the referral of people who have developmental disabilities to other appropriate community resources. This will result in the revised articulation of performance expectations and performance measures for this function.

“Why do resource and referral if there is nothing to be referred to?”

Goal I.3: The Division will improve the correlation between the need for service expressed by individuals and the availability of adequate and appropriate resources in their communities that are consistent with their choice. To achieve this goal the Division will focus on the following activities: » Use the Prioritization of Urgency of

Need for Services (PUNS) database to project the need for services by geographic areas that will enhance the opportunity for appropriate services to be available in their community or in a location that supports important relationships;

“Community services should be closer and more available.”

» Use the PUNS or other database to document those people currently receiving services who are not in need of or requesting different or additional services and ensure continuing capacity for their services;

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» Use home- and community-based services (HCBS) waiver amendments to support the redesign of services available in the community to be more reflective of expressed need and best


practice and to increase the Division’s ability to leverage federal financing;

» Use its emerging partnership with stakeholders at all levels of the system to identify ways to generate additional resources through new federal reimbursement, new appropriations, or the targeted reallocation of existing appropriation that will be invested in creating more supports and services in the communities and enhancing the capacity of existing services and supports without reducing any person’s current service package or options, unless that is their choice.

Goal I.4: The Division will, without compromising its ability to deliver high quality care to people in its SODCs, identify and commit direct service resources that can be re-directed to support people who wish to remain in their community when dislocation from their home or loss of community services is likely in response to changing needs of the person. The Division will similarly identify and commit direct services to support people at risk of losing their chosen ICF/DD placement in response to their changing needs. To achieve this goal the Division will focus on the following activities: » Create and provide continuing support

for crisis response teams that can offer appropriate interventions or additional support to mitigate the need for emergency placements;

» Develop trainings and a decision tree for crisis response teams;

“The current system forces people into a crisis before they can receive funding and services.”

» Use the expertise and experience in its developmental center staff and management to facilitate and assist the development of supports and services in the community that are

effective in preventing or responding to the episodes, crises or changes in service needs;

» Use the expertise and experience of its developmental center staff, in concert with community service coordination or ICF/DD case management and involved provider agencies to create appropriate short-term placement opportunities when required or requested. Short-term placement might include respite, medical respite and crisis stabilization, among other services;

» The Division will set quantifiable performance targets and performance measures for direct services resources that are available for this function as part of its annual work plan;

» The Division will evaluate whether it is necessary to hire and train additional SODC-based professionals to accomplish these activities and if necessary, the Division will set quantifiable goals for hiring and training.

II. Participant-Centered Service Planning and Delivery

Desired Outcome: Services and supports are planned and effectively implemented in accordance with each participant’s unique needs, expressed preferences and decisions concerning his/her life, as determined by the person with a disability. Goal II.1: The Division, in collaboration with other disability service agencies and providers, will continue to enhance the level of standardization and comprehensiveness of the evaluation and diagnosis processes, further ensuring that both are focused on the individual’s real needs and choices. To achieve this goal the Division will focus on the following activities:

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» Develop a cross-system assessment

portfolio for people who have developmental disabilities. This would be the foundation for all service planning for all people entering or in the system, including those in SODCs and ICF/DDs. This assessment portfolio will be comprised of a series of instruments that create a clear and valuable profile of the person and support individualized service planning as well as policy and management needs (i.e., project service utilization, manage quality, support budget appropriation requests, etc.). This would likely integrate existing assessment tools (including the PUNS) but create a standardized platform for this information that supports a “single system” approach. It should also facilitate a person’s choice of any service platform.

“I should have a choice in my goals.”

Goal II.2: The Division, in collaboration with service coordination agencies and staff providing case management functions in ICF/DDs and SODCs and other stakeholders, will ensure that the outcomes achieved through service coordination or case management for all people in the system are directly related to each individual’s expressed needs and preferences, the result of their direct involvement, responsive to major changes in their lives and reflect informed choice, as reflected by the individual or as reflective of the individual as expressed by the person who has decision-making authority. To achieve this goal the Division will focus on the following activities: » Assess, with the assistance of

consumers, families and other stakeholders, the ways that the current service coordination or case management function can be improved to better achieve that outcome. Of importance to this assessment are:

the comprehensiveness of the planning process and resulting service plan; the consumer’s access to ongoing service coordination that is value-added; integration of specialized (developmental disability or mental health) and generic services; the effectiveness of identifying and responding to issues encountered in the person’s services or living situation; and the responsiveness of the process and outcomes to changes in a person’s life situation or choices that merit consideration as changes in the service plan;

“We should have a voice in our service plan.”

» Identify, in collaboration with service coordination or case management providers and other appropriate stakeholders, the steps that need to be taken to make improvements, and begin taking related action. The Division will develop a multi-year strategy for continuous improvement in this function that produces the systems changes necessary to support the desired outcome;

» Review the current methods of evaluating the “person-centeredness” of the service coordination function, process and outcomes and, if necessary, develop new performance measures and monitoring instruments to support the continuous quality improvement of this service.

Goal II.3: The Division will continue to support advocacy by, for and on behalf of people who have developmental disabilities as they participate in service planning and delivery. To achieve this goal the Division will focus on the following activities:

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» Create performance expectations of service coordination that emphasize and support self-advocacy and advocacy and that provide effective


support for decisions made by self-advocates or their families and/or guardians regarding needed or desired services;

» Continue to support self-advocacy training for people who have developmental disabilities, regardless of where they live or what services they receive;

“We have to work as a team and have our opinions heard.”

» Clarify and provide technical assistance and policy direction that supports a person having the authority to direct and manage their own services, to the extent they wish;

» Clarify the extent to which the service coordination function is one of advocacy or one of gate-keeping;

» Create performance expectations of service providers that emphasize and support self-advocacy and advocacy, including providing information that supports equitable access and informed choice;

» Develop a web-based access to service coordination information that supports self-advocacy and informed choice;

» Collaborate with other organizations that invest in self-advocacy and advocacy;

» Collaborate with other organizations that invest in projects or initiatives that increase the level of knowledge and awareness that people with developmental disabilities and their families have as they participate in person-centered planning and service delivery.

Goal II.4: The Division will develop protocols, instruments and processes that improve its ability to monitor that services selected are delivered and that the impact of those services on the person who has a

developmental disability is in keeping with the service plan. To achieve this goal the Division will focus on the following activities: » Research, identify, design and

implement, in collaboration with appropriate stakeholders, a system of performance outcomes and outcome measurement instruments that are person-centered and appropriate to the service system;

“The quality of what providers deliver depends on family oversight…and how big is your mouth. You pray you stay healthy.”

» Incorporate consumer participation in its monitoring of service delivery efforts;

» Develop an information base of service performance that is available and accessible (in a constructive manner) to assist people who have developmental disabilities and their families in the service planning process;

» Provide appropriate program direction, technical assistance and financing to support continuous improvement activities among all service providers.

“…she is supposed to swim once a month but it doesn’t happen…and it’s the one thing she loves…”

III. Provider Capacity and Capabilities

Desired Outcome: There are sufficient supports and service providers and they possess and demonstrate the capability to effectively serve participants.

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Goal III.1: The Division will support the development or realignment of appropriate support and service capacity across all service environments to meet


expressed need and offer appropriate levels of personal choice. To achieve this goal the Division will focus on the following activities: » Work with community provider

agencies to improve the equity of service availability across geographic regions, to improve the balance of services in all regional areas, to improve the availability of specialized services (i.e., services for people with mental health issues, autism, dual diagnoses, fetal alcohol syndrome, etc.) and to improve access to transportation to support access;

“Increase access to transportation.”

» Work with community provider

agencies to develop the skills and capacity to support the people who choose or who would prefer to move to the community. This could be done through a variety of activities, including: the flexible use of rate enhancements to support more intense services and supports; the use of increased funding to improve the skill levels and expertise of the workforce; increasing authorized service capacity; redefining HCBS waiver services; increasing the authorized enrollment level for HCBS waiver participants; creating a more flexible spending plan to allow growth in those service or support areas where demand is greatest; the targeted use of SODC staff to assist community providers to develop appropriate capacities or to assist individuals as they transition from SODCs; the targeted use of SODC staff to provide needed direct service in the community (especially clinical services in specific areas); among other options;

» Work with SODC management and staff and ICF/DD provider agencies to continue to enhance and improve the skills and expertise of the workforce

delivering care to people who choose those services;

“My dreams are not able to be supported because of a lack of finances.”

» Work with community provider agencies and/or organizations to evaluate the potential of alternative staffing and service paradigms, including non-shift staffing, separating housing and services, individual budgets and individual support options;

» Work with the “Direct Support Professional Workforce Initiative” that helps people with disabilities and organizations find and keep quality direct support professionals or personal assistants.

Goal III.2: The Division will evaluate its SODC admission and discharge policies and practice to minimize unnecessary admissions (those who choose SODC admissions when other, preferred community options exist) and to ensure that lengths of stay are managed to the direct benefit of the individuals who choose those services. To achieve this goal the Division will focus on the following activities: » The Division will continue and enhance

its practice of evaluating emergency placements by identifying other options in the community or in ICF/DDs that meet the individual’s needs and support their interest in remaining in the community. This includes working assertively with community providers to assist their efforts to find interventions or additional supports that would allow, to the greatest extent possible, the person to be maintained in their community setting of choice;

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» The Division will evaluate its clinical assessment and discharge planning policies and practice in light of the


commitment to facilitate returning people, to the greatest extent possible, to the community of their choice if their choice of or need for SODC placement was time-limited;

» The Division, in collaboration with stakeholders, will reassess the appropriate target population(s) for SODC services. With the enhanced community capacity to respond to more intense service needs, the Division may consider redefining its core, direct services to a more discrete or differentiated set of needs or circumstances. For instance, some people who have developmental disabilities and are elderly and have medical issues may be more appropriate for an SODC setting, given the services available. Likewise, people who have dual diagnoses may more often find the services of a SODC appropriate to their needs. The Division will develop an assessment and set of recommendations on whether or not the services available in all or any SODC should be focused in any way. This would not affect current residents who did not choose to move, but may affect future admissions, in keeping with the two previous actions;

» The Division will work with ICF/DD providers to assess whether or not similar issues affect their admissions and discharges.

Goal III.3: The Division will use annual budget appropriation, including monies available through new revenue generated by fee-for-service conversion initiatives, to improve its ability to plan and develop or support the development of adequate service capacity and transition unused capacity to other supports or services or other geographic areas with unmet need. This will allow the Division to manage services in a proactive manner, rather than reactive or crisis-driven manner, to the extent that funding is available. To

achieve this goal the Division will focus on the following activities: » Develop the technology platform and

databases that support effective planning for capacity, including data related to consumer demand (as expressed in the PUNS, future cross-disability assessments, national prevalence or incidence data, national studies of emerging needs such as autism, fetal alcohol syndrome, etc.);

» Develop, in collaboration with stakeholders, a need and capacity projection model that effectively predicts need to inform budget appropriation and service development decisions;

» Continue to support efforts in place within the Department, Division, provider community and other initiatives to improve the quality and quantity of qualified direct service workers, including support for recruitment, training, and retention. Feedback from the community included comments about how staff turn over can be disruptive to the provision of services and to the individuals receiving the services;

“We are really sad when staff we like have to leave the field because to get more money.”

» Create the flexibility to shift available funding to emerging demand areas with minimum administrative action to enable the system capacity to shift with changing demand (i.e., allow new monies appropriated for system growth to be used for more than community integrated living arrangement (CILA) growth).

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Goal III.4: The Division will work with appropriate State agencies to examine the feasibility of a medical residency program to support hands-on training in the medical and dental treatment of individuals with developmental disabilities.


To achieve this goal the Division will focus on the following activities:

» Investigate the feasibility for a residency program and potential collaborations that may be made with one or more hospitals and dental providers;

» Develop a report that summarizes this investigation and proposes options for a residency or residency-like program.

IV. Participant Safeguards Desired Outcome: Individuals receiving DHS/DD services are safe and secure in all service settings (in their homes and communities), taking into account their informed and expressed choices. Goal IV.1: The Division will work with appropriate State agencies and stakeholders to upgrade the licensing, monitoring and re-licensing processes and program monitoring processes and instruments to ensure appropriate levels of accountability and response and that involved activities effectively safeguard a person’s health, well-being, safety and quality of life. To achieve this goal the Division will focus on the following activities: » Develop licensing standards that are

integrated with program effectiveness and performance measures;

» Develop person-centered performance outcomes that focus on appropriate safeguards and are used to assess provider performance;

» Develop various levels of technical assistance to assist providers in quality improvement activities to prevent or respond to problem areas;

» Work to increase funding to improve direct service worker skills and management capabilities to enhance their ability to effectively safeguard a

person’s health, well-being, safety and quality of life;

» Create, in collaboration with major stakeholders, a method of accountability and effective sanction activities that maximize the Division’s ability to take action when there is actionable evidence of the absence of safeguards;

» Create an integrated licensing and program monitoring and incident reporting database that supports cross-system information sharing of performance data related to participant safeguards;

» Develop workforce-based standards for cultural competence, consumer safety and well-being, and other safeguards to improve staff and management capacities to provide and self-monitor appropriate safeguards.

“Medications are often used as a ‘quick fix’ for behavioral issues without regard to side effects or cause.”

V. Participant Rights and Responsibilities

Desired Outcome: Participants receive support to exercise their rights and in accepting personal responsibilities. Goal V.1: The Division will work with appropriate State agencies and stakeholders to ensure that people with developmental disabilities are aware of their rights and are able to exercise those rights. To achieve this goal the Division will focus on the following activities:

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» Inform individuals of their fundamental constitutional rights, federal and State statutory rights and Medicaid due process rights, and support individuals to exercise those rights.


» Educate individuals about the

complaint and grievance process, support participants in seeking resolutions and resolve complaints and grievances in a timely fashion.

» Train and support individuals to exercise and maintain their own decision-making authority.

“We should cheer each other on and be a team.”

VI. Participant Outcomes and Satisfaction

Desired Outcome: Participants are satisfied with their services and achieve desired outcomes.

See Goal II.4

Goal VI.1: The Division will continue to include individuals with developmental disabilities or their representatives to serve on decision-making boards, committees and councils, which impact their lives and services.

“Listen to people, create opportunities for people to speak up, ask questions.”

VII. System Performance

Desired Outcome: The system supports participants efficiently and effectively and constantly strives to improve quality.

Goal VII.1: The Division will provide strong leadership in creating the public policy, operational guidance, accountability and cost-effective financing of a broad array of supports and services that improve the State’s capacity to meet the needs of all people who have developmental disabilities. To achieve this goal the Division will focus on the following strategic issues:

» Nurturing, enhancing and expanding the partnerships necessary to provide effective public policy for all facets of developmental disabilities;

» Access to effective and stable services that allow people who have developmental disabilities the opportunity to remain in their home or, to the greatest extent possible, in a community setting of their choice, or effective and stable services in the developmental center or ICF/DD that they may choose;

» Support for choices people make during a person centered planning process regarding meaningful opportunities to be integrated and engaged in their community;

“We want the community to accept us as an individual.”

» Expand its capacity to support the identification of emerging evidence-based practice, service outcome, and quality improvement opportunities that will improve its capacity as a provider of direct service and as administrator of a broad-based system of private service providers;

» Expand its ability to impact policy and practice decisions in all public policy areas for people who have developmental disabilities (i.e., children served by other systems, Department of Labor issues, etc.).

Goal VII.2: The Division will work with stakeholders to develop a fiscal platform (fiscal policy, funding, payment methodology and accountability systems) that enhances the system’s ability to provide adequate numbers of effective, person-centered services to a broader range of people who need developmental disabilities services. To achieve this goal the Division will focus on the following activities:

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» Maximizing its ability to leverage

federal funding to increase total investment in the service system;

» Exploring the impact of increased control of resources by people who have developmental disabilities or their families or guardians on their quality of life and the improvement goals for the system (i.e., does a more market-driven approach or individual resource allocation approach or other approach provide better support for the individuals and improve the system?);

» Exploring the impact and feasibility of integrating into the Division’s financial infrastructure the concept of “money follows the person;”

» Articulating fiscal policy, funding levels, and audit, payment and billing policy in clear, user friendly terms that are widely available and regularly updated;

» Creating appropriate fiscal incentives to support the growth of needed community services, the allocation of existing capacities, and enhanced quality of care;

» Creating the appropriate fiscal disincentives for poor outcome performance;

» Improving the system’s infrastructure related to user-friendly access and information, timeliness of services, and quality management; and to support a person’s choice of provider.

Goal VII.3: The Division will create a single quality management plan and quality management capacity for the entire developmental disabilities services system. This will provide an integrated framework for and enhance the quality management activities that exist within the SODC, ICF/DD and community segments of the service system and impact public policy and advocacy

activities. To achieve this goal the Division will focus on the following activities: » Developing a policy framework that

integrates the various quality management principles, outcome-based performance expectations and continuous quality improvement activities in the system into a unified framework;

» Creating a unified or integrated portfolio of consumer assessment instruments;

» Developing a standardized set of content or components for individualized service plans;

» Developing a uniform or integrated set of outcomes and outcome measurement instruments, although indicators and measures may be tailored to specific programs or services;

» Develop uniform standards for consumer health, safety, well-being and quality of life;

» Develop a unified data collection system that is fully integrated, supports effective case and service capacity management, quality management, and public policy decisions regarding service design, accountability and funding;

» Review the role of the independent service coordinator to see if there are quality-related functions that can or should be enhanced;

» Develop a standardized set of content or components that better integrates licensing policy and practice;

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» Develop a uniform program or service monitoring protocol or standardized set of content or components, with accessible and shared information;


» Develop an effective accountability and

enforcement capacity;

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» Develop an integrated practice of training and technical assistance designed to improve the workforce, provider agency capacity to provide quality services, and increased support for self-advocacy and person-centered services.


Appendix A: Strategic Plan Focus Groups

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Date

Group

Time

Location

October 12, 2004

Chicago/Metro Networks SODC Parents

1:00pm to 3:30pm

Thompson Center Chicago

October 12, 2004

Chicago/Metro Networks Community Parents

3:30pm to 5:00pm


October 13, 2004

Chicago/Metro Central Office Staff

9:00am to 12:00noon


October 13, 2004

Chicago South and South Suburban Networks Consumers

2:00pm to 4:00pm

Howe – Tinley Park

October 14, 2004

North Suburban and Chicago North Networks Consumers

9:00am to 11:00am

Salvation Army – Norridge

October 18, 2004

Greater IL Networks Community Parents

1:00pm to 3:30pm

McFarland Library Springfield

October 19, 2004

DDD Central Office

9:00am to 12:00noon

Centrum North Bldg. Springfield

October 19, 2004

Central & Southern Network Consumers

1:00pm to 3:00pm

McFarland Library

Springfield October 20, 2004

Greater IL Networks SODC Parents

12:00noon to 2:30pm

Murray – Centralia

October 26, 2004

Northwest & North Central Advisory Councils

9:00am to 12:00noon

Library – Peoria

October 26, 2004

Northwest & North Central QMRPs

1:00pm to 4:00pm

Library – Peoria

October 26, 2004

Northwest & North Central Consumers

6:00pm to 8:00pm

Peoria ARC – Peoria

October 27, 2004

DD Central Office

9:00am to 12:00noon

Centrum North

October 27, 2004

DD Managers and Facility Directors

1:00pm to 4:00pm

Centrum North

October 28, 2004

Statewide Advisory Council

10:00am to 3:00pm

Northfield Conference Center Springfield

October 29, 2004

Southern & Central Advisory Councils

9:00am to 12:00noon

McFarland – Springfield

October 29, 2004

Southern & Central QMRPs

1:00pm to 4:00pm

McFarland – Springfield

November 3, 2004

North Suburban and Chicago North Advisory Councils

9:00am to 12:00noon

CAU – Chicago

November 3, 2004

North Suburban and Chicago North QMRPs

1:00pm to 4:00pm

CAU – Chicago

November 4, 2004

South Suburban and Chicago South Advisory Councils

9:00am to 12:00noon


November 4, 2004

South Suburban and Chicago South QMRPs

1:00pm to 4:00pm



Appendix B: Committee Member Lists STRATEGIC PLANNING AD HOC COMMITTEE Amann, George Shapiro Parents’ Organization Bell, Richard Service, Inc. Bibo, Michael Illinois Health Care Association Burke, Rita Consumer Representative Burnett, Chris Illinois Association of Rehab Facilities Bushman, Laurie PACTT Learning Center Cameron, John AFSCME Chmura, Max Navigant Consulting, Inc. Cooper, Robin NASDDDS, Inc. Cronin, Charlotte Family Support Network Dew, Donald Habilitative Systems Dufresne, Derrick The Institute on Public Policy Dykstra, Art Trinity Services Foss, Alice Don Moss & Associates Hecht, Dan Advocates United Kennedy, Debra Equip for Equality Lee, Pat Consumer Representative Lewandowski, Dreux Macon Resources Messner, Ron Consumer Representative Moss, Don Don Moss & Associates Naiditch, Zena Equip for Equality Nelis, Tia People First O’Beirne, Karen Illinois Health Care Association Paulauski, Tony The Arc of Illinois Prerost, Joan Consumer Representative Pritchard, Lester Consumer Representative Rainey, Sandra Consumer Representative Romano, Sheila Illinois Council on Developmental Disabilities Rubin, Brian Consumer Representative Stover, Janet Illinois Association of Rehab Facilities STATEWIDE ADVISORY COUNCIL Andrews, Mary Provider Chicago Applewhite, Claude Consumer Chicago Balcazar, Dr. Fabricio At Large Chicago Bartles, Robert Provider Dixon Bell, Samuel Consumer Chicago Bennin, Eileen Consumer Representative Highland Park Bown, James Consumer Representative Dixon Cozart, Robert Consumer Jacksonville Devine, Patrick Provider Dorsey Elmore, Edward Family Belleville Fisher, William Consumer Highland Park Gordon, William Consumer Chicago Hale, Darlene Consumer Representative Chicago Kajdanowski, Judy Consumer Representative Chicago Keefe, James Provider Monmouth Lacey, Beth Provider Brookfield Lehman, Merlin Consumer Representative Bloomington

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Mabry, Lenny Consumer Loves Park


Milligan, Daniel Consumer Representative Springfield O’Shea, Lynn Provider Elgin Porter, Joseph Provider Chicago Reyes, Sonia Consumer Joliet Ruklik, Diane Consumer Representative Frankfort Rollins, Chad Provider Swansea Ryan, Sandy At Large Chicago Walker, Amy Consumer Watseka Watkins, Christine Consumer Belleville Wesolowsky, Sophia Consumer Chicago DIVISION OF DEVELOPMENTAL DISABILITIES EXECUTIVE MANAGEMENT TEAM Johnson, Jeri Director of Division of Developmental Disabilities Cunningham, Brenda Assistant to the Director Baker, Pamela Assistant to the Project Coordinator Armitage, Tom Senior Manager Hoskin, Reta Senior Manager Mostoufi, Maryam Senior Manager Nichols, Myra Senior Manager Rudolph, Steve Senior Manager Spriggs-Ploessl, Mary Senior Manager Sunder, Theodore Senior Manager Haugh-Stover, Maureen Greater Illinois Network Coordinator Ryal, Andrew Metro Network Coordinator Dittmer, Michael Chief, Bureau of Quality Assurance & Systems Improvement Canna, Jay Facility Director, Howe Developmental Center Collins, Ira Facility Director, Shapiro Developmental Center DeBerry, Sharon Facility Director, Mabley Developmental Center Decker, David Facility Director, Ludeman Developmental Center Farmer, Jan Facility Director, Choate Developmental Center Hurt, Michael Facility Director, Jacksonville Developmental Center McWilliams, Susan Facility Director, Kiley Developmental Center Turner, Joseph Facility Director, Fox Developmental Center Veach, Jamie Facility Director, Murray Developmental Center

B-2

Jeri JohnsonDirector, Division of Developmental Disabiliites

217.524.7065www.dhs.state.il.us/mhdd/dd

division of developmental disabilities 2007 — 2011

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