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A Path Forward: Building a Community-Based Plan for Delaware Commission on Community-Based Alternatives for Persons with Disabilities Table of Contents Letter from the Commission . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1-2 Mission of the Commission . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 History and Purpose of the Commission . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2-4 Stakeholders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Membership . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4-5 Accomplishments. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5-6 Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6-7 Guiding Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Strategic Plan: Fiscal Years 2008–2012 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Public Comment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7-8 Housing. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8-9 Money Follows the Person . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9-10 Employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11-12 Transportation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12-14 Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14-17 Workforce Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17-18 Assessment Care Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18-19 Strategic Plan: Beyond Ten Priorities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19-20 2007 Commission Members . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Text Terms & Template Acronyms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 End Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Timeline FY2008–2012 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . See Inside Backcover i The Governor’s Commission On Community-Based Alternatives For Individuals with Disabilities likely to be educated alongside peers, retain employment, and be more satisfied with their Letter from the Commission environment. We believe that Delawareans in the policy-mak- A Path Forward ing arena and in the community now better understand the terms and concepts of com- To: Governor Ruth Ann Minner munity inclusion than they did when the H.R. Senator, Thurman Adams 90 Commission Report was published in 2003. Representative, Terry R. Spence This report included examples of publicly- and Members of the 144th General Assembly privately-funded programs that serve individuals with disabilities in the community. These pro- This report unveils the five-year goals for the grams exist and continue to grow because direc- Governor’s Commission on Community-Based tors, managers, and employees have found that Alternatives for Individuals with Disabilities. including individuals with disabilities in edu- Created by Executive Order 50 and signed by cational, recreational, social, and occupational Governor Ruth Ann Minner on September 22, settings produce benefits for individuals with 2003, the Commission has made a significant disabilities, others without disabilities involved impact in the community since its inception. in the program, and the community as a whole. Commission members have a unique under- Administrators in schools, vocational and recre- standing of the importance of improving state ational programs, government departments and systems and services as we move toward full divisions, and private businesses increasingly find community inclusion for children and adults creative ways to provide supports and services to with disabilities. This report builds on the Delawareans with disabilities. Over the last five Commission’s ongoing accomplishments by years, more community leaders and organizations outlining the group’s goals for the next five years, have recognized the value and cost effectiveness and continues movement toward a comprehensive of this movement. They are helping Delaware to system of community services and supports for meet the needs of individuals with disabilities and individuals with disabilities. are receiving a return themselves. We hope you are inspired to find ways to fund, replicate, and Delawareans with disabilities should be able to promote these types of community supports and access the support and services they need in the services. community. Community inclusion builds a stron- ger, more diverse community and is more The Commission’s work in the next five years cost effective than housing and caring for all will focus on expanding current programs and individuals with disabilities in an institution- increasing community options for individu- alized setting. Institutionalization is extremely als with disabilities. Many groups must work costly for governments and taxpayers compared together if we are to meet these goals, including to providing a streamlined system of services in the Department of Health and Social Services, the community through private-public partner- the Department of Education, the Department of ships. With the appropriate supports and services, Services to Children, Youth and Their Families, individuals with disabilities can successfully work, providers of services, advocates, caregivers, and participate in recreational activities, and contrib- individuals with disabilities themselves. These ute to their communities. They are also more groups and individuals must collaborate as allies 1 to ensure that the mandates of the Supreme qualified individuals with disabilities in community Court Olmstead Decision are met in Delaware. settings when appropriate rather than institutions. During the creation of this report, hundreds of people took the time to give input and insight Following the Olmstead decision, the Joint Finance into how Delaware can better address the com- Committee reported gaps in the service delivery munity needs of individuals with disabilities. systems in Delaware and a federal government interagency planning group published a compre- We look forward to the progress that will be hensive report with over 400 recommendations for made toward these goals, building on what we facilitating community integration. Furthermore, have already accomplished. Once again, we thank 39 other states had already formed commissions the members of the Commission, subcommittee to develop plans to increase and improve com- members, staff and community advocates for their munity-based supports and services for indi- dedication to our guiding principles and goals. We viduals with disabilities. In 2002, the Delaware also extend an open invitation to all policy mak- General Assembly passed House Resolution 90 ers and members of the public who are interested (H.R. 90) creating a “Commission to Assess and in the Commission’s work to become involved by Make Recommendations on Community-Based joining one of the Commission’s subcommittees. Alternatives for Individuals with Disabilities.” H.R. 90 created the Commission to: Respectfully, 1. Collect and compile existing State reports and Rita Landgraf information relevant to Olmstead planning; Vincent Meconi, Secretary, Delaware Department of Health and Social Services 2. Supplement such reports and information to Co-Chairs comprehensively assess existing needs and resources; 3. Closely monitor the availability of Federal and private funds and actively coordinate applica- Mission of the Commission tion for such funds; 4. Prepare a comprehensive, multi-year inter- agency plan to ensure that Delaware programs To develop a comprehensive administrative support community alternatives to institution- and legislative plan for a diversified, alization; and individualized, cost-effective service and 5. Submit a preliminary report to the Joint support system that enables individuals Finance Committee by February 15, 2003, with disabilities to live and work in the and a final report to the General Assembly most integrated setting of their choice within 45 days thereafter which includes the plan, options and costs, legislative and regu- latory action needed to support plan imple- mentation, prospects for obtaining History and Purpose of the supportive Federal or private funds, and recommendations. Commission By 2002, many community programs serving individuals with disabilities existed across the In June 1999, with guidance framed by Title II State of Delaware. The Commission was formed of the Americans with Disabilities Act of 1990 to gather information about these programs and which mandates systematic deinstitutionalization, the number and needs of individuals choosing the United States Supreme court rendered an community supports in the State of Delaware, historic decision in Olmstead v. L.C., 527 U.S. 581. to accurately assess these programs, and to The Olmstead decision requires states to place suggest costs and funding options for proposed 2 new programs. In March 2003, the Commission terly to better understand the issues and provide presented a report in which Commission mem- a broader perspective. The term disability is used bers requested that a formalized oversight group throughout this report. However, Commission representing cross-disability stakeholders be members use this term in a broad sense to refer charged with monitoring and refining the goals to any condition that can affect activities of daily and objectives presented in the report. Following living to include developmental, intellectual, sen- successful advocacy of the Commission report sory and physical disabilities, mental illness, and and through Governor Ruth Ann Minner’s ini- addictions. tiative, Executive Order 50 created a permanent Commission in September 2003. Executive Order The majority of Commission members are 50 charges the Commission with: engaged in the work of the subcommittees. The current subcommittee topic areas include assess- 1. Ensuring maximum cooperation between ment, housing, healthcare, employment, trans- government agencies that serve the disabilities portation, Money Follows the Person, and direct community, and between public and private workforce development. Subcommittee charges sector entities that serve the disabilities include: community; Assessment — Develop a cross-disability/condi- 2. Providing recommendations to the Governor tion assessment process, to identify the individual- and Secretary of the Department of Health ized support and services needed for a person to and Social Services to refine the state’s plans live in the community. Through the assessment and other reports/surveys dealing with process create a database of comprehensive community alternatives to provide services to consumer profiles that will enable greater collabo- qualified individuals with disabilities in the ration, coordination, and planning among govern- most integrated settings; ment agencies and programs, private providers, 3. Supplementing such plans and reports to and natural support systems to facilitate comprehensively assess existing needs and successful community living. In addition, the resources; database will be utilized to promote future plan- ning of budget needs and services. 4. Providing recommendations to the Governor and General Assembly with respect to funding Housing — Develop a comprehensive plan to prioritization among projects designed to ensure that each person in the State of Delaware provide services to individuals with disabili- with a disability/condition has appropriate supports ties; and and services to live in safe, affordable housing that is accessible and integrated in the community with 5. Monitoring the state’s progress toward imple- appropriate supports and services. menting existing plans to provide services to individuals with disabilities. Healthcare — Develop a comprehensive plan to ensure that individuals with disabilities/conditions Identifying the barriers to community integration will have dependable, high-quality healthcare in is a major part of the Commission’s charge to the community and affordable comprehensive make recommendations and assess needs. Barriers health insurance. are often obvious, such as crosswalks, bus stops, Employment — Develop a comprehensive plan and public areas which lack accessible design to ensure that individuals with disabilities/condi- for people with physical disabilities. Others are tions are prepared to search, obtain, and retain less obvious, imbedded in a community through employment to establish careers based upon their long-standing misconceptions about individu- preferences, interests, and strengths. als with disabilities, such as discrimination in a Transportation — Develop a comprehensive school or workplace which isolates an individual plan to ensure that individuals with disabilities/ from his/her peers. The Commission addresses conditions have access to a full range of trans- inclusion from a cross-disability standpoint, and portation options throughout the state. These the Commission members meet as a group quar- options should be convenient, reliable, affordable, 3 and ensure complete accessibility and mobility for individuals with disabilities who live in the community. Membership Money Follows the Person — Develop a comprehensive plan to promote legislation, regulation, policies, and programs to ensure One of the most important recommendations in funding designed to follow individuals as they the H.R. 90 Commission Report highlighted the move from long-term care facilities to the dynamics between government and those it serves. community. Additional funding will support Due to a lawsuit, government agency representa- persons at risk of being admitted to long-term tives were directed to refrain from participation on care facilities to remain in the community with the Commission during the H.R. 90 Commission individualized supports chosen by the person activities.1 However, after successful advocacy at risk. If the individual resides in a long-term of the Commission Report and through the care facility, funds will be used to cover the Governor’s support, the Governor’s Commission net average cost of service to the individual on Community-Based Alternatives for Individuals while there. with Disabilities recognized Delaware’s commit- Workforce Development — Develop a compre- ment to community-based alternatives for indi- hensive plan with yearly-identified objectives that viduals with disabilities and recognized that such will ensure that individuals with disabilities/condi- services advance the best interests of Delawareans. tions have access to reliable, qualified support Executive Order 50 recognized that “the best way personnel and that support personnel are valued, to achieve [community inclusion] is for the pub- compensated, and respected, thereby ensuring lic and private entities representing Delaware’s ongoing recruitment and retention. disabilities community and those who serve that community to help chart the state’s progress toward those goals.”2 Stakeholders Executive Order 50 established a Commission that consists of 19 members. The Commission membership ensures that important stake- The planning, implementation, and evaluation holder groups are represented and have of services and supports for individuals with dis- decision-making authority to implement rec- abilities should include all stakeholders affected ommendations in state agencies based on the by the system changes. Each stakeholder group Commission’s recommendations. Members are listed has offered input regarding how plans will selected as follows: affect them. Inclusive planning should continue to involve representatives from all community sub- • two members of the House of Representatives sets, especially: (one selected by each caucus); • two members of the Senate (one selected by • individuals with disabilities; each caucus); • nuclear families, families of origin, extended • the Secretary of the Department of Health and families, and foster families of individuals with Social Services; disabilities; • the Director of the Delaware State Housing • advocacy groups and spokespeople for individ- Authority; uals with disabilities; • the Director of the Delaware Transit Corporation; • provider agencies; • the Director of the University of Delaware’s • state and local elected officials; Center for Disabilities Studies; • Delaware employers; • the Chair of the State Council for Persons with • community leaders; and the Disabilities; • general public. 4 • the Director of the Division of Services for Aging and Adults with Physical Disabilities; • the Director of the Division of Developmental Accomplishments Disabilities Services; • the Director of the Division of Substance A major accomplishment of the H.R. 90 Commission Abuse and Mental Health; was establishing the formalized oversight group through • the Director of the Division of Vocational Executive Order 50. Governor Minner was very Rehabilitation; responsive to the H.R. 90 Commission members’ • a representative from the provider community; recommendations when creating this new group. Similarly, Commission members have responded • a representative from one of the Governor’s accordingly by working in collaboration to not Advisory Councils within the Department of only collect information about community supports Health and Social Services; and services but to also engage program managers • a representative from the community at large; and funders in increasing Delaware’s resources. and • three representatives from consumer advocacy In FY 2006, the Delaware General Assembly allo- agencies. cated $250,000 to the Commission. In line with the goals of the Commission, Commission mem- bers, with recommendations from subcommittee members, proposed projects and voted on the most appropriate use of the funding. Funding was allocated for the following purposes: Project Description Amount Outcome Funding for Full $50,000 The Center for Disabilities Studies (CDS) is contracted to support Commission Staff the Commission and the Chairs and Staff group. CDS is also Support responsible for managing the Commission website. Medicaid Buy-In $53,000* The Delaware Division of Medicaid and Medical Assistance began Infrastructure infrastructure development for a Medicaid Buy-In program (See Development Goal 3, page 11). Assessment $50,000 A consultant was hired to develop a comprehensive assessment Subcommittee strategic plan. Consultant fees Respite Care Plan $50,000 The Center for Disabilities Studies with assistance from the Development Delaware Caregivers Support Coalition will design a lifespan respite care service for the State of Delaware that will be used to demon- strate how a consumer-focused, integrated respite service can be effectively administered statewide. Direct Support $35,000 The Center for Disabilities Studies will create a strategic alliance of Workforce partners to nurture the vision, harness the resources, and create an Curriculum and environment that supports change in the state’s service delivery Credentialing system, especially as they pertain to the way frontline Direct program Support Professionals are trained, advanced, and valued. Direct Support $12,000 The first statewide conference for Direct Support Professionals, Workforce held in May 2006, was attended by approximately 300 people from Conference Delaware and neighboring states and attracted Wilmington News Journal coverage. * $20,000 was initially allocated to support an accessible crosswalk pilot project, which was later determined to be unfeasible. This money was reallocated to fund the Medicaid Buy-In Infrastructure project. 5 Other accomplishments from 2003 to 2007 include: Executive Summary • The Money Follows the Person subcommittee was established as a result of Senate Resolution 26. The subcommittee was charged with In June 1999, the United States Supreme Court undertaking all necessary steps to fund, facili- rendered an historic decision in Olmstead v. L.C., tate, and complete a study on the feasibility of 527 U.S. 581. The Supreme Court encouraged implementing the “Money Follows the Person” states to develop plans to ensure that programs initiative in the State of Delaware. A federal grant was awarded to Delaware in 2007 through and services provided by the states promote com- the combined efforts of the Division of Medicaid munity integration for individuals with disabilities and Medical Assistance, the subcommitte, and rather than favoring institutional services. partner organizations. State funding was secured in June 2007 through the Delaware In September 2003, Governor Ruth Ann General Assembly for $352,800 to match the Minner signed Executive Order 50, creating the federal dollars to begin implementation. See Governor’s Commission on Community-Based page 9 for the Money Follows the Person section. Alternatives for Individuals with Disabilities. The • The Delaware General Assembly allocated Executive Order affirms that Delaware is commit- $223,700 for the Medicaid Buy-In program. ted to community-based alternatives for supports This goal was the priority of the employment and services and that these community-based subcommittee. See page 11 for the programs should effectively foster independence Employment section for more information. and fully engage participation in society. The Commission’s overall purpose, throughout the • Expanded and improved transportation options in 2004, including Night Bus Service and ongoing planning process, is to ensure that all Flexible Service programs, a transfer system citizens, including those with disabilities, have the between counties, a new DART policy against ability to live: cell phone use by drivers, a DART ADA • close to family and friends, Compliance Team, and a resource list available at www.dartfirststate.com/directory/. • as independently as possible, • The Employment subcommittee helped • engaged lives that include productive employ- increase training for hiring managers and ment, and reporting of the State’s usage of State • in settings where they can participate in Personnel Office programs. community life. • A comprehensive strategic plan for the assess- ment of individuals with disabilities in The initial goal of the Commission was to develop Delaware was created by the Assessment a five-year Comprehensive Administrative and subcommittee and will be considered in coor- Legislative Plan with identified priorities, goals, dination with Housing subcommittee recom- objectives, action steps, and fiscal notes. The mendations and the Delaware State Housing plan is intended to be a living, evolving plan that Authority’s Discharge Planning subcommittee. responds to the needs of individuals with disabili- • Funding was increased for fiscal year 2008 to ties and their families. The Commission, through eliminate the existing waiting list for Personal its subcommittee structure, is charged with con- Attendant Services (PAS). tinuously updating the plan, monitoring progress toward achieving the goals and objectives of the plan, and adapting to unforeseen issues. It is the intention of the Commission to be an ongoing body to identify and adopt planning priorities annually. 6 This current plan includes guiding principles • the authority to control their resources and which frame the 10 goals for the State of make decisions about their lives; Delaware to strive toward accomplishing in the next five years to enhance community-based ser- • support from state government services, vices for individuals with disabilities and their providers, agencies, family members, and friends in an organized, comprehensive fashion; families. The 10 goals reflect the priorities of the public, advocacy groups, and Commission mem- • flexible use of funding so that dollars are bers for the next five years. It is expected that as invested in services and supports and are not circumstances and realities change, these priorities restricted to facilities or programs; and will be modified to meet the needs of individuals • the right to receive services and supports in the with disabilities and families. least restrictive environment. Guiding Principle 5 — The Commission is supportive of universal healthcare measures designed to deliver medical and long-term Guiding Principles supports to all individuals based on need, regardless of disability status. Guiding Principle 6 — In order to continue to The following principles are of paramount impor- enhance and develop quality services, reliable tance to individuals with disabilities, their families, collecting and reporting of outcome data are advocacy groups, and the citizens of Delaware. essential. Outcome data about public services These principles are critical to implementing the and programs should be available to facilitate goals and objectives of the Commission’s plan and both performance-based management and in providing services and supports to individuals budgeting to produce a higher quality of services. with disabilities. The principles provide the back- ground for understanding the goals, objectives, and action steps of the Commission. Guiding Principle 1 — Service delivery systems Strategic Plan: Fiscal Years should provide supports that are designed to meet the needs of individuals with disabilities as they 2008–2012 transition from one living environment to another and from one support service to another. The work outlined throughout this plan and the Guiding Principle 2 — The lives of all individ- formation of goals, objectives, and action steps uals, including those with disabilities, change; were constructed within the Commission’s sub- therefore they will have different support needs at different times in their lives. committee structure. The Commission, as the formal body, reviewed the subcommittees’ proposed Guiding Principle 3 — Supports and services goals and objectives, and was then charged with should provide individuals with disabilities with their prioritization and adoption. the right to choose, direct, and manage their own affairs. Whether in a long-term care facility or a community-based setting, service delivery should focus on the preferences of the individual and his/ her goals. Individual choice and self-determina- Public Comment tion respects the experience and knowledge of the individual by valuing these four principles: freedom, authority, support, and responsibility. Community members were invited to participate Guiding Principle 4 — Individuals with disabili- in the goal prioritization process by submitting ties should have basic rights that include: comments regarding the draft goals and objec- tives at one of three public meetings held in each • the freedom to exercise the same rights as all citizens; county, by voicemail, by e-mail, by mail, or at 7 a meeting hosted by an advocacy organization. services that facilitate personal independence and Public comments were collected and reported by continued engagement in society. The major chal- University of Delaware Commission staff mem- lenges reported by individuals with disabilities and bers contracted by the Commission. the agencies that support them in exiting long- term care facilities are the availability of appropri- The Commission reviewed the public comments ate housing and serving the individuals on the at the June 14, 2007, meeting to determine if the long waiting lists for Section 8 housing.3 plan needed amending. Consensus was that the comments would be integrated into the work of The stock of affordable, accessible housing units the subcommittees, which would further evalu- must be consistently identified and maintained. A ate and act upon the public comments during system needs to be created to more effectively fiscal year 2008. A number of revisions, addi- match individuals with disabilities to those hous- tions, and clarifications to definitions were made ing opportunities. This system should be easily to the report in response to public comment. and readily accessible to individuals with disabilities. Commission members appreciate the time and effort by members of the public in order to ensure Quality housing plays a major role in creating liv- a comprehensive plan. A full report of the public able communities. In order for individuals with comments can be obtained at the Commission’s disabilities to have access to community living, a website, www.udel.edu/ccba. range of in-home services and supports must be present. These supports include personal atten- The following narrative provides a perspective dant services (PAS), in-home medical, non-medi- on the work of each subcommittee, including cal, assistive technology, personal care services, background of the development of corresponding and access to behavioral healthcare. Personal goals, objectives, and action steps. The report will attendant services are presently funded through also highlight current or state of the art initiatives both general state revenue and tobacco-tax revenue pertaining to an identified area. sources. As the waiting list continues to grow funding may prove to be inadequate. Housing Home Modification Tax Credits Contributor: Rita Landgraf Goal 1: Ensure a sufficient number of safe, affordable, integrated, and accessible Government initiatives can be implemented to facili- housing options for individuals with tate livable communities. Programs in Georgia and disabilities. Virginia offer state tax credits to persons with disabili- ties who make changes in their homes that allow them Appropriate housing options are neces- to continue to live there. The Olmstead Supreme Court ruling has been the catalyst for Indiana, New sary for individuals with disabilities to remain Hampshire, North Dakota, and Washington to fund safe and comfortable within the community. home modifications for individuals with disabilities Overwhelmingly, individuals want to live in their in order to prevent institutionalization. Georgia offers own homes and communities. Individuals with tax credits to individuals with disabilities who include disabilities and those who are aging are confront- certain accessibility features in a new home or reno- ing housing challenges and affordability gaps vate an existing home. Virginia offers a tax credit to that limit choices and/or make it very difficult to anyone for similar features added to an existing home. The Housing Subcommittee will continue to explore maintain independence and involvement within the the feasibility of government incentives for home community. The overriding goal of the Commission medications for individuals and families in Delaware. is to create and support livable communities that have appropriate and affordable housing, adequate and available mobility options, and support 8 The concept of universal design, in which hous- ing is designed to be accessible for individuals with disabilities, is not only critical to those with Money Follows the Person disabilities, but also enables the aging population to age-in-place, thus maintaining and enhancing independence. Private and public sectors in the Goal 2: Implement Money Follows the housing development, construction, and rehabili- Person (MFP) program. tation industries should not only retrofit homes when the need arises, but should design and build The “Money Follows the Person” (MFP) initiative, new homes that meet specifications of universal included in the Deficit Reduction Act of 2005, design. is currently being implemented by the Centers for Medicare and Medicaid Services. As a com- The Housing subcommittee has identified a need ponent of the New Freedom Initiative, MFP is to advocate for visitability laws which mandate a nationwide effort to remove barriers to com- that housing barriers are removed. One approach munity living for individuals of all ages with dis- is to subsidize the visitability requirements for abilities or chronic illnesses.4 MFP is a system of housing through state or local funds. Another flexible financing for long-term care services and approach is to eliminate rules that discourage supports that allows Medicaid funds to be spent shared housing units, commonly referred to as on home- and community-based services as an “mother-in-law suites” or “accessible dwelling alternative to institutionalization. MFP supports a units.” This option has allowed many individuals growing consensus that long-term supports must to receive supports while maintaining a high level be transformed from an institutionally-based and of independence. provider-driven system to a person-centered and consumer-controlled system. Collectively, housing advocates can work at the federal level to advocate for tax incentives or The Supreme Court’s Olmstead Decision has low-interest loans to help low-income homeown- direct implications for state Medicaid programs ers renovate to create accessible environments. and the state’s ability to serve individuals with dis- Mandates are needed to include more aging-in- abilities in home- and community-based settings. place/accessibility features in subsidized housing MFP allows the state flexibility to expand services units, to support federal incentives to encourage to individuals to prevent institutionalization and public and private builders to develop innova- to support those individuals exiting long-term and tive designs, and to provide adequate government intermediate care facilities. funding for a range of affordable housing options. The Commission advocates that the support Public policies must ensure that individuals with needs of the individual must drive the funding, disabilities receive a fair share of all local, state, rather than the funding driving which supports and national housing resources. Community-based are provided.5 In June 2006, the State Senate options for individuals who are aging and those passed Resolution 26, establishing a subcommit- with disabilities should not end at group homes tee of the Governor’s Commission to “undertake or assisted-living facilities. Instead, these oppor- all the necessary steps to facilitate and complete tunities should be expanded to include a con- a study on the feasibility of implementing the tinuum of options from personal home ownership ‘Money Follows the Person’ initiative in the State or rental opportunities to small congregate living of Delaware.”6 Funded through the support of arrangements. various public and private agencies and indi- viduals, the report was completed by the Lewin See page 1 of the insert for planned Housing sub- Group in February 2006. The MFP coalition is committee objectives and action steps. made up of stakeholders representing the dis- ability community, the Delaware Department of Health and Social Services, the Delaware Division of Medicaid and Medical Assistance, AARP, and 9 Community Ombudsman manner and that services are provided so institution- alization will not occur. Other states that have a com- Contributor: Jamie Wolfe parable program include Pennsylvania, Connecticut, Arkansas, Minnesota, South Dakota, and Utah. Like the long-term care ombudsman that assists nurs- ing home residents with complaints and concerns, the In order for this program to be successful, a community ombudsman would assist individuals who Community Bill of Rights must be established to out- are having problems with their home and commu- line the specific rights entitled to an individual receiv- nity-based services. This individual would be respon- ing home and community-based services. Modeled sible for investigating complaints when a service user after the nursing home residents’ bill of rights, the is not receiving supports that he or she is entitled to Community Bill of Rights will list items pertaining under the home and community waivers. In addition, to community services. For example, the bill could the ombudsman could facilitate conflict resolution include provisions to responding to the needs of indi- between the service user, the provider, and the state viduals in non-medical emergencies. The goal of the agency. The ombudsman will work with the fund- Community Bill of Rights is to ensure individuals can ing source to assure a provider that meets the needs stay in their homes and receive the proper supports to and wants of the service user is identified in a timely avoid unnecessary institutionalization. representatives from the state legislative branch. • To monitor progress in areas of accessible In the fall of 2006, the subcommittee initiated a housing, transportation, and workforce devel- coalition responsible for developing and submit- opment by creating annual benchmarks. ting a grant proposal for funding to the Centers of Medicare & Medicaid Services (CMS). CMS The demonstration project funding focuses on approved the Delaware proposal in May 2007, shifting systems to enhance service delivery in the awarding Delaware and 31 other states funding to community-based on specific needs of the indi- implement a demonstration project for the next viduals being served. In addition, this funding will five years. Major objectives of the demonstration enable a minimum of 100 individuals currently project are: residing in long-term care facilities to have access to community-based services. This demonstration • To shift the amount of Medicaid funding project will help to identify gaps in the current supporting institutional care to a greater services and supports system and identify ways to proportion of community-based care. Delaware improve the system for all users. This will have a currently spends 65% of its long-term care lasting impact on all individuals with disabilities funding for institutional settings. and those who are aging. • To expand opportunities for consumer choice and self-directed services. Delaware’s MFP MFP reflects a long-awaited commitment to inde- operational protocol will include developing pendence, choice, and dignity.7 MFP allows for policies and procedures to offer consumers states to create and fund a system that promotes self-direction and ensure that individualized, long-term care within the community, affords required supports are established. states some flexibility in the variety of services • To develop a true continuum of services. offered, and enables states to allow the consumer Successful rebalancing can only be achieved authority in the direction of these services. The with effective collaboration between public, MFP initiative in Delaware reflects the state’s private, and consumer organizations. commitment to fostering self-determination with • To monitor program outcomes and ensure strong community partnerships and participation consumer protections by developing annual among older individuals and those with disabilities. benchmarks. See page 3 of the insert for planned MFP sub- committee objectives and action steps. 10 disabilities. Some services that can be offered Employment could include: improvements to personal care, transportation, durable medical equipment, com- munity-based treatment, or a supportive employ- ment waiver. Coordination between the activities Goal 3: Establish a Medicaid Buy-In of other state agencies in support of working Program. individuals with disabilities and the state Medicaid program is critical in building comprehensive supports.10 Goal 8: State will provide funds and resources for long-term support for The Medicaid Buy-In (MBI) Program is intended all people with disabilities to maintain to assist individuals with disabilities by allowing employment. them to work without losing health benefits. MBI is a catalyst, which enables individuals with The majority of individuals with disabilities who disabilities to participate in the world of work want to work are frequently discouraged from while still receiving Medicaid coverage. Recipients doing so by barriers in the current system. The would contribute to the cost of the plan based on Ticket to Work and Work Incentives Improvement a sliding fee formula. In addition, many employed Act of 1999 seeks to address many of these bar- individuals would only require Medicaid benefits riers. Individuals with disabilities often choose to supplement an employer’s health benefit plan not to be employed because they are concerned that did cover non-traditional healthcare supports about a potential loss of healthcare coverage if such as attendant care services and durable medical they return to work. The Act expands Medicare supplies. MBI removes the disincentives for and Medicaid coverage for certain categories of people who refrain from work or “spend-down” employed individuals with disabilities. The Act their incomes to maintain their Medicaid benefits. also provides for improvements in employment More than 30 states have implemented a Medicaid supports from government agencies. These Buy-In Program. The Commission’s Employment provisions indicate a commitment to enabling subcommittee has identified this initiative as individuals with disabilities to be productive their paramount priority. The Delaware General members of the workforce.8 Assembly allocated $223,700 for the Medicaid Buy-In Program in June 2007. Stakeholders continue to express concern over the limitations and complexities of the current Best practices for inclusive employment settings employment system for individuals with dis- are governed by the following general principles: abilities. In general, society has low employment expectations for individuals with disabilities, in • Individuals with disabilities are valuable human resources. spite of multiple examples of individuals who have highly successful careers. Government dis- • Foster a community expectation that individ- incentives to work, such as connecting income uals with disabilities will participate in the labor to healthcare benefits eligibility, have perpetuated force to the maximum extent possible. these myths. These low expectations often begin • Anyone, regardless of disability, should have early in life and are repeated and encouraged as the opportunity to participate in the labor force individuals mature. Especially important, however, and have the right to fair treatment in exer- is the message that is now being sent to employers cising this opportunity. that individuals with disabilities can be productive • Local labor market (employers) needs must be and successful employees.9 met. Some of the government complexities can be • There must be a mutual benefit to the addressed by planning, designing, and creating employee with a disability and the employer. improvement strategies to make the Medicaid • Employment must be in typical, integrated state plan and/or waiver programs provide more workplace settings. effective support to potential employees with 11 • All employment options must be available, their home settings, individuals need a variety of from entry-level jobs to advanced positions. mobility options available. Isolation has forced • Individuals have the right to choose their many individuals into institutions and nursing employment and employer. home environments. Appropriate mobility options are necessary for individuals with • Employers have the right to choose whom they disabilities to remain safe and comfortable hire. within the community. • Individuals have the right to take reasonable risks in the employment they choose. The Delaware Transit Corporation continues to System, Service, and Support Principles will: face daily challenges in providing transportation to increasing numbers of riders. Urban sprawl and • work to maximize employment for individuals traffic congestion have increased delays, road rage with disabilities; frustrations, and adjustments in travel time. The • provide a high-quality workforce for employers; frustrations are mounting for riders and others who are impacted by the delays including employ- • provide effective leadership at the state and local level; ers, family members, friends, and other service providers. The Transportation subcommittee has • work for all job seekers; • be responsive to the needs of employers and individuals with disabilities; Ride Vouchers • effectively match potential qualified employees Contributor: Rita Landgraf with employers; • effectively track employment and earnings and Some creative ideas in responding to transportation demands include examples from around the country. demonstrate clear outcomes of success; The Atlanta Regional Commission sells discounted • be available to individuals, whenever they vouchers to people who are at least 60 and cannot need it; drive. These vouchers allow individuals to hire someone they know to drive them rather than depending on a • be built on a stable funding base; formal government program. Another idea is provided • not put the individual or the employer at risk; and by MIT AgeLab Director, Dr. Joe Coughlin, which involves the emergence of “car clubs”. Individuals who no • emphasize communication and coordination longer drive may pool their resources to buy a car, then among all the elements of the system.11 share it with a younger driver who serves as the chauffeur. This program could be especially attractive in college See pages 4 and 14 of the insert for MBI and towns where many students have flexible schedules. planned Employment subcommittee objectives and action steps. Some urban and suburban communities have set up fleets of small low-rise buses that travel on flexible schedules between residential areas and commercial set- tings. Individuals meeting the 55+ age criteria can walk from their new homes to centralized communal facili- Transportation ties and get a ride in a community van to more distant stores and entertainment sites. Another idea that is slowly gaining momentum is the creation of walkable communities specifically designed to avoid sprawl and Goal 4: Ensure that reliable transportation foster easy mobility. These communities are not age- services and choices are available. restrictive; one model exists in Rockville, Maryland. Parks and common areas are scattered throughout the The level of independence a person has is largely community and a free shuttle bus takes people from determined by their ability to move around within their homes to the Washington Metro, commercial a community. To stay connected and freely move areas, and recreational facilities.12 within communities is one of the most difficult All of these mentioned initiatives can target both obstacles for individuals with disabilities and individuals with disabilities and the aging population. those aging-in-place. To avoid isolation within 12 Bank of America management met with Stephen Bank of America Transportation Program Kingsberry, who serves as the director of the Delaware Transit Corporation which manages DART, and Contributors: Becca Dougherty, Mark Feinour is a member of the Commission on Community- Bank of America, a company known for its diver- Based Alternatives for Individuals with Disabilities. sity and inclusion efforts, continues its commitment Bank officials learned that the Delaware Transit to individuals with disabilities through its Support Corporation was fully supportive of its proposal. In Services division. Support Services employs 300 associ- fact, modeling an employee-sponsored transportation ates with disabilities nationwide with 220 in Delaware. service is one of the Transportation subcommittee’s goals. Kingsberry acknowledged that the public trans- According to Mark Feinour, Support Services execu- portation system was challenged with the number of tive, approximately 70% of associates with disabilities riders that go to and from Bank of America at the do not drive to and from work themselves. For more same time each day coupled with increased demand than 10 years, most associates used a bank-subsidized for services throughout the State. program to ride DART to and from work. However, Bank of America launched an alternative shuttle service Frankly, according to Kingsberry, the demand for with THG Transport for their associates in April 2007. paratransit service exceeds the supply. As Chair of the Commission’s Transportation Subcommittee, Before the new program was launched, on an average Kingsberry advocates for improving service to meet work day morning approximately 14 DART buses demand and for seeking new ways to offer private would line up at the company’s Deerfield location to market transportation alternatives to riders with dis- drop off passengers and return in the evening after abilities. the work day. Bank of America is the largest site for paratransit customers statewide. While the DART part- This private partnership is a model for the nation. nership was important and valued and DART tried its Bank of America developed this program to promote best to coordinate routes with multiple riders heading its business model for diversity and growth, and data to the same area, the system had difficulty handling suggests that the change is cost-effective for the divi- such a large demand for the specialized services for rid- sion and is helping to boost associate job satisfaction. ers with disabilities from as far away as Middletown. Bank of America reacted to employees’ needs beyond Due to the high demand, it was common for associates the physical workplace because the company recog- with disabilities to be dropped off early and picked up nizes that this type of program benefits both employ- late. At the end of the day, DART riders and super- ee and employer by promoting workplace diversity. visors stayed at the offices until all employees were Other Delaware businesses have contacted Feinour picked up. regarding this employee service and have expressed Considering the large number of Support Services interest in developing their own program based on employees who relied on the public transportation sys- Bank of America’s model. Feinour is more than will- tem to get to and from work, the cost to partially sub- ing to share information to facilitate other businesses’ sidize bus tickets, and the cost associated with waiting adoption of this program. Bank of America continues for DART buses, department management considered to collect data on the program and is willing to share an alternative to DART. Their solution was to devel- this information as a replicable model for other op a shuttle service specifically for Support Services businesses. employees in partnership with THG Transport. outlined several priorities to address these issues should be made to transform the current methods and to improve the system within a five-year time- of transportation. frame. Many of the recommendations focus on the expansion of the fixed-route paratransit The Transportation subcommittee believes people system to offer transport options, as well as pro- with disabilities should have expanded trans- viding more accessible taxis and car/van pooling. portation options beyond public transportation. There are many opportunities for creative col- This group has identified a number of policies to laboration, serving older and younger passengers improve the current system, including accessible to the benefit of all. A long-term commitment driver’s education classes, vehicle ownership 13 programs and repair services, and accessible road Individuals with disabilities should have depend- signage. Private citizens and corporations can able, high-quality healthcare readily accessible also use their resources to provide transit ser- within their local communities. Individuals with vices. These options include accessible car and disabilities have faced many challenges in access- van pooling and encouraging private taxi and car ing timely and appropriate healthcare services. services to operate accessible vehicles.13 DART Challenges in the community include the inabil- participates in a vehicle-sharing program with ity to obtain appropriate quality services, lack of qualifying non-profit organizations to provide access to specialists, and healthcare profession- transportation to clients of those organizations. In als who refuse to serve or limit the options made fiscal year 2006, this program allowed Delaware available to patients with disabilities. Insurance non-profits to provide 300,000 trips to citizens, coverage is frequently unavailable or prohibi- extending the reach of transportation services tively expensive and has narrow menus for spe- according to the DART representatives from the cific disability related needs, such as attendant Transportation subcommittee. care and assistive technologies. These narrow menus of services have put increased pressure See page 5 of the insert for planned Transportation on the Medicaid system, which has subsequently subcommittee objectives and action steps. increased Medicaid costs.14 Therefore, goals relative to healthcare are promi- nent in this five-year plan. In the absence of comprehensive national reform, the Commission Healthcare supports meaningful incremental steps that will move our state system toward one that provides access to quality care and affordable coverage for Goal 5: Develop a comprehensive, flexible, both acute and long-term services for individuals consumer driven healthcare service system of all ages and health conditions. that would more effectively facilitate community living. Widely recognized principles adopted to guide efforts in the public debate over healthcare reform Goal 9: Effectively treat mental illness as at the national and state level include: a medical condition requiring the same • All individuals have a right to healthcare quality of care as physical illness. services when they need them. • All individuals have a right to access healthcare Goal 10: Expand infrastructure to coverage that provides adequate financial accommodate medically, emotionally, and protection against healthcare costs. mentally fragile children transitioning to the adult service system. Mental Health Parity that do not apply to other services. “Even more than other areas of health and medicine, the mental health field is plagued by disparities in the availability of and Contributor: AARP 2006 Policy Book access to its services,” observed US Surgeon General As referenced in Mental Health: A Report of the Surgeon David Satcher in the preface to the report. General, mental health is fundamental to overall Spending for mental health has declined as a percent- health. Mental illness can occur at any age, any income age of overall health spending. Moreover, the public level, and can be as debilitating as any other major sector, principally Medicaid and other state or local medical condition. However, insurance policies typically government sources, are paying for an increasing share place restrictions on coverage for mental health services of overall spending for mental health or substance 14 Innovative Heathcare Options prescription coverage. Maine’s Dirigo Choice Health Plan and Massachusetts Commonwealth Contributor: Delaware Public Policy Plan are examples of state subsidized insurance. Institute • Insurance Purchasing Pools target individuals who lack access to both employer-sponsored insur- The following represents some options that states are ance and government programs. Pools can provide exploring or implementing to address the need for an efficient source of health coverage for small healthcare reform and are inclusive of all populations. employers and individuals needing to buy coverage Some of these options are gaining attention within on their own. Purchasing pools differ from state Delaware. subsidies because they provide employers with a • A Single-Payer Government Run Healthcare wider choice in plans and greater bargaining power System is exclusively funded by the government due to multiple employer participation. At least and similar to the Canadian healthcare system. eight states have some form of group purchasing In the United States a single-payer system might arrangements in place. resemble Medicaid, Medicare or Veterans Affairs • State Premium Assistance allows Medicaid to pay type coverage. The implementation of a single- a portion of a low-income worker’s share of the payer system would require revenue enhancements employer-sponsored insurance premiums for those to fund the government expansion. who are currently eligible for those programs. • State subsidized insurance is supported by a public- States must include this in a Medicaid State Plan private partnership model that establishes a health Amendment. States set the income eligibility levels plan for small businesses. Either a state-designated for premium assistance as well as the minimum board or a private insurer administers the plan, and benefit package. Five states now operate such a the state subsidizes the premium for low-income program. workers, while small businesses also pay a share • Employer health insurance mandates, also known of the premium. Most programs create a standard as “pay or play” programs, mandate businesses to benefit package that usually includes acute care, offer healthcare coverage to their employees or pay regular medical health checks and a penalty into a state fund to provide coverage. • All individuals have a right to high-quality • Methods of provider reimbursement should healthcare. promote high-quality medical care, efficient service delivery, and compensate providers fairly. • All individuals should have a reasonable choice of healthcare providers. • Healthcare spending should support the goals of more efficient planning, budgeting, and • Financing of the healthcare system should be resource coordination. equitable, broadly-based, and affordable to all individuals. • Health promotion and disease prevention efforts should be strengthened. abuse services. States should ensure adequate fund- tal health services. Individuals should be able to choose ing for mental health and substance abuse services, the same delivery system for mental health services as develop and coordinate comprehensive delivery sys- for physical health services.15 tems for such services, and emphasize special training in cultural and ethnic sensitivity for service providers. States should ensure parity (e.g., in day or visit lim- its and cost-sharing levels) beyond the provisions of the Mental Health Parity Act for all plans providing mental health services. Medicaid law and regulations should provide for payment at adequate rates for men- 15 • Individuals share a responsibility for safe- states should establish policies to pay relatives guarding their health by educating themselves and friends who care for people with long-term and taking appropriate preventative measures support needs as part of a care plan. Programs to protect their health, safety, and well-being. and policies must protect consumers, avoid the • Acute, chronic, and long-term care services erosion of the family care networks, guard against should be coordinated and integrated to fraud and abuse, and avoid disincentives for ensure a continuum of care throughout an unpaid caregiving. individual’s lifetime.16 Delawareans face a major challenge in health- Transition planning is essential for individuals care and long-term service and supports as the with disabilities who exit the Children, Youth and population ages and individuals are living longer. their Families system and/or the education system. The nation lacks a comprehensive system that Whether the transition occurs at age 18 or 21, serves the needs of millions of older individuals the planning and coordination far too often does and individuals with disabilities. Long-term sup- not occur until the transition is imminent. This port services encompass a broad range of services transition population needs to be addressed as and supports needed by individuals of all ages a component of the work of the Commission. who have physical or mental impairments and Coordinated efforts must be made to include have lost or never acquired the ability to function the Department of Health and Social Services, independent of the supports. Surveys indicate that Department of Services for Children, Youth and most individuals who need long-term support Their Families and the Department of Education services strongly prefer to remain in their homes, in addressing and enhancing a seamless, wrap- receiving assistance from family or friends or around transition into the adult service delivery from paid direct service professionals. However, system. because of the high cost of services, lack of private affordable financing options, and limited public In order to expand home- and community-based funding, people often do not have access to the services, states should design budgets and poli- service options they prefer.17 cies to eliminate institutional bias, expand access to home and community, and allow consumers Implementation of any comprehensive public to choose the setting in which they receive ser- program should be phased in to ensure orderly vices. In the areas of family support and caregiving, development of the new system. Expansion of services Family Support Services and state-funded home and community-based services programs, some states provide respite care for caregivers, Contributor: AARP 2006 Policy Book while others allow payments to relative and friends who care for people with long-term support needs. Families and individuals need comprehensive supports Some states give families who care for individuals with that allow them to direct their own care and help disabilities and/or older relatives limited support either families and friends bear the financial and emotional through Medicaid, state funding, or tax policies. These responsibilities of caregiving. Some states provide indi- programs include respite, cash allowances, tax incen- viduals with opportunities to manage their own long- tives, family leave policies, worker’s compensation, and term services. Federal and state programs that assist healthcare benefits. While the above policies provide caregivers are limited, even though unpaid family and incentives for family caregiving, the Supplemental friends provide the bulk of long-term services. In 2004, Security Income program reduces benefits for benefi- an estimated 44.4 million caregivers age 18 and older, ciaries who live with their families, creating a disincen- 21% of the adult population, provided unpaid care to tive for family caregiving. Services for caregivers are an adult family member or friend. Through Medicaid extremely insufficient.18 16 should be accompanied by the development of • Supporting research to identify effective ways infrastructure, inclusive of healthcare and direct of addressing staffing shortages. services workers, case managers, and other need- ed personnel that will permit the delivery of a • Encouraging schools to include in their curri- comprehensive range of home- and community- cula long-term support services related special- izations, such as home health, supportive based services. housing, and home care in their curricula for Direct Support Professionals. See pages 7 and 15 of the insert for planned Healthcare subcommittee objectives and action • Encouraging the state to establish training steps. requirements for all individuals who provide personal care in home and community settings and are paid through public funds. The training should include a core curriculum covering the needs of individuals who require long-term Workforce Development services and supports and should be inclusive of classroom instruction and practicum experience. • Training and continuing education services that Goal 6: Ensure fiscal and human resources focus on how to maximize the quality of care necessary to develop and retain a while supporting the independence, autonomy, professional workforce. dignity, and privacy of individuals with disabilities. A Direct Support Professional (DSP) provides Efforts must promote changes in the work envi- support services to individuals with disabilities to ronment to encourage employee recruitment and assist with activities of daily living within the com- retention. This could include adequate staffing munity settings. A large proportion of home care recommendation, providing increased salaries and services do not require utilizing a medical approach, health benefits, providing specialized staff, encour- rather services are highly personal in nature aging employee participation in decisions on (e.g., bathing, dressing, toileting, and grooming). individuals’ with disabilities support needs, offer- Other activities supported by DSPs may include ing ongoing education on best practices and pro- supports to facilitate independent living such as viding programs, career ladders and lattices, and budgeting, shopping, and transporting to various educational incentives to facilitate career advance- individual and/or community activities. ment. For example, a ‘career lattice,’ would allow for professional/career advancement beyond a Industry guiding principles to increase the avail- certificate and should include specializations in ability of qualified long-term services and sup- health, mental health, recreation, socialization, ports personnel include: and employment. • Ensuring that Medicaid and other public reim- Finally, the creation and promotion of a profes- bursement for providers’ labor costs are suffi- sional association would allow DSPs to advocate cient to offer wages and benefits to attract and for themselves while improving worker morale retain the workforce. and allows a vehicle for formal collaboration, • State wages and salaries being commensurate continuing education, peer support, and formal with others in the region. networking. • Creating legislative mechanisms to increase compensation for Direct Support See page 9 of the insert for planned Workforce Professionals. These mechanisms should Development subcommittee objectives and include adequate accountability procedures, action steps. such as audits, to ensure the reimbursement increases designated for staffing costs are actually used for that purpose. 17 Workforce Training skills to increase the knowledge, skills, and abilities of consumers, staff, and service provider agencies Contributor: Renee Bean about their mutual and respective needs. The values include teamwork, inclusion, mutual respect, and per- The Commission’s Workforce Development subcom- sonal autonomy, based on the nationally recognized mittee includes representatives from provider agencies, Community Support Skills Standards, developed by state divisions, the University of Delaware, and others the Human Services Research Institute in 1996. These with firsthand experience who provide professional standards also include training in participant empower- direct support to persons with disabilities. These ment, communication, assessment, community and experts have identified challenges to retaining and service networking, facilitation of services, community recruiting a qualified workforce, including the turnover living skills and supports, education, training and self- rate for first-year direct support workers in Delaware, development, advocacy, vocational, educational and which is currently around 67 percent. Workers report career support, crisis intervention, organization partici- that one of the challenges to staying in direct support pation, and documentation. is the lack of training to equip them to perform effec- tively, coupled with the lack of unqualified, unreliable The Workforce Development subcommittee, through colleagues. Persons with disabilities who rely on these a contract between the Commission and the Center employees to assist them in daily activities bear the bur- for Disabilities Studies, will direct the development den of an unreliable workforce that includes workers of a curriculum that can be introduced, piloted, and who do not know how to communicate with persons implemented across Delaware’s Health and Social with disabilities, often do not show up for work, and Services Departments serving individuals with disabili- are not knowledgeable about person-centered and com- ties. This training will serve to enhance the quality of munity-based services and supports. care and service and could serve as the foundation for a professional credential for frontline Direct Support In response to a demand from both the workforce and Professionals. The curricula have the potential to sup- persons with disabilities, the Workforce Development port the state and its contracted provider agencies, subcommittee proposed a plan to implement a more their staff, and guarantee people with disabilities a effective training in community-based service delivery. qualified workforce, improve workforce recruitment The system should serve individuals with disabilities and retention rates, establish a basis for negotiation for based on their needs, not their diagnosis; however, wages and benefit parity for all direct service staff, and training has not evolved from an institutional, medical establish a professional credential/certification for the model. In the next five years, the Commission aims to direct support professional.19 offer a statewide training program focused on value- based skills to enhance the quality of services and self-determination of persons with disabilities. The curriculum will utilize core competencies and technical limiting options solely to what is currently avail- able within the community. All individuals with Assessment Care Planning disabilities residing in institutional settings will need to participate in an assessment to identify their community support needs and services. Goal 7: Develop common assessment domains for eligibility and care planning. The Supreme Court further highlighted that: The Supreme Court’s Olmstead Decision ensures • institutional placement of individuals who can that individuals with disabilities in long-term care benefit from community settings perpetuates facilities and institutions and those at risk are “unwarranted assumptions” that persons so assessed in a fair and timely manner to determine isolated are incapable or unworthy of partici- how community living would be possible without pating in community life; and 18 • confinement in an institution severely dimin- and should be made for tracking against the indi- ishes the everyday life activities of individuals, vidual plan. The tracking should have a capabil- including family relations, social contacts, work ity for aggregation of quality assurance measures. options, economic independence, educational Collectively, the recommendations identified in advancement, and cultural enrichment.20 the Assessment Plan, the MFP proposal, and the Discharge Exemplary Practices are designed to Nursing homes continue to provide services to encourage and facilitate plans of care that will a larger number of individuals who are aging or improve oversight, outcomes assessment, and have disabilities, even when many of the indi- resource utilization across all state-administered viduals living in nursing facilities would prefer programs serving the population. to receive services in community-based living arrangements. This statement is supported by data The development of protocols to aid in common from Delaware’s Minimum Data Set (MDS) which assessment domains should be established. A indicates that 19.9% (756 of 3,846) of individu- tool identifying support needs with an emphasis als living in nursing facilities indicate a prefer- on housing needs, integration, preferences, and ence to live in the community in the 2006 Second risk of homelessness should be a priority, along Quarter’s MDS questionnaire. The MDS is data with an information technology platform neces- collected on individuals in Delaware’s Medicaid- sary to support this assessment tool. These efforts and Medicare-certified long-term care settings. highlight the need for reliable data collection and Additionally, data from surveys of Delaware’s management. By recording individuals’ needs for AARP membership indicates very few individuals supports and services in the community, housing (4%) would want to receive long-term care ser- agencies will be better able to serve clients and vices in a nursing facility.21 project future needs. Currently, Delaware disability agencies and advo- See page 11 of the insert for planned Assessment cacy groups engage in various information dis- subcommittee objectives and action steps. semination and outreach activities regarding community-based long-term care options and services. However, there is no single process reaching all targeted long-term care groups. The need to address this important gap from both a Strategic Plan: Beyond Ten transition and diversion perspective is a goal of Priorities the Assessment, Discharge Planning, and MFP subcommittees. This report marks an initial five-year The Assessment subcommittee was allocated Comprehensive Administrative and Legislative funding and was successful in the development Plan with identified priorities, goals, objectives, of a five-year comprehensive plan to support and action steps and fiscal notes. Commission mem- finance incremental steps to develop comprehen- bers have adopted this plan with the intention sive, cross-disability, cross-agency assessments of accomplishing goals in increments. While the which would facilitate a coordinated effort in care Commission has prioritized a five-year agenda, planning. In addition, this information will be subcommittees continue to meet to review and set aggregated to identify trends to aid in the plan- priorities in conjunction with the Commission’s ning for future services, supports, and areas of work and priorities. The Commission members’ concentration such as access to housing, trans- resources and influence extend beyond the top portation, and employment. One integrated plan- ten priorities to continued work in subcommittee areas. ning format should be adopted and utilized for all services and supports while allowing and promot- As the plan evolves, the Commission, through its ing person-centered goals and interests. Provision subcommittee structure, is charged with for measurable plan outcomes is recommended 19 continuous updating of the plan, monitoring plans will be updated on an ongoing basis in the progress toward achieving the goals and objectives next five years. Subcommittees Chairs and Staff are of the plan, and adapting to unforeseen issues. responsible for updating Commission members of Harnessing the knowledge and expertise of sub- changes to the plan at Commission meetings and committee members, as well as receiving ongoing will be posted on the Commission’s website at input from members of the public, subcommittee www.udel.edu/cds/ccba. 20 2007 Commission Members Commission Chairs: Pam Maier Subcommittee Staff State Representative, Delaware Members: Rita Landgraf Legislative District 21 (R) Advocate Carol Barnett Money Follows the Person Assessment Subcommittee Chair Division of Services for Aging Subcommittee Chair and Adults with Physical Honorable Vincent Meconi Daniese McMullin-Powell Disabilities, Transportation Secretary, Department of Health Advocate Subcommittee Staff and Social Services Housing Subcommittee Co-chair Timothy Brooks Commission Members: Guy Perrotti Center for Disabilities Studies Director, Division of Services for Healthcare Subcommittee Dori Connor Aging Adults and Physical Co-chair State Senator, Delaware Disabilities Legislative District 12 (R) Doyle Dobbins Marianne Smith DelARF, Employment Joseph Connor Director, Division of Subcommittee Co-chair Governor’s Advisory Council on Developmental Disabilities Substance Abuse & Mental Rebecca Dougherty Services Health Center for Disabilities Studies Sandra Tuttle Workforce Development Michael Gamel-McCormick President, Easter Seals Subcommittee Staff Director, Center for Disabilities Housing Subcommittee Co-chair Studies, University of Delaware Bonnie Hitch Workforce Development Delware Transit Corporation Former Commission Subcommittee Co-chair Transportation Subcommittee Members: Co-chair Andrea Guest Scott Green Director, Division of Vocational Kyle Hodges Bank of America Rehabilitation, Employment State Council for Persons with Subcommittee Co-chair Richard Patterson Disabilities, Healthcare and National Alliance for the Housing Subcommittees Staff Larry Henderson Mentally Ill in Delaware (NAMI) Executive Director, Independent Pat Maichle Resources, Inc. Michael Shriver Developmental Disabilities Bank of America Council, Money Follows the Renata Henry Person Subcommittee Staff Director, Division of Substance Allan Zaback Abuse and Mental Health Division of Services for Aging Ginger Nobles Adults and Physical Disabilities Easter Seals Margaret Rose Henry Workforce Development State Senator, Delaware Commission Staff Members Subcommittee Co-chair Legislative District 2 (D) include: Victor Orija Saundra Johnson Rebecca Dougherty Division of Services for Aging Director, Delaware State Center for Disabilities Studies, and Adults with Physical Housing Authority University of Delaware Disabilities, Employment and Helene Keeley Assessment Subcommittees Staff Steven Holochwost State Representative, Delaware Center for Disabilities Studies, Legislative District 3 (D) University of Delaware Stephen Kingsberry Tracy Mann Executive Director, Delaware Center for Disabilities Studies, Transit Corporation University of Delaware Transportation Subcommittee Co-chair 21 Text Terms MFP — Money Follows the Person PAS — Personal Attendant Services ADA — Americans with Disabilities Act Template Acronyms AARP AARP DOT, Delaware Department of DelDOT Transportation DSHA Delaware State Housing Authority DPH Division of Public Health (DHSS) CCCD Coordinating Council for Children with Disabilities DSAAPD Division of Services for Aging and Adults with Physical CDS Center for Disabilities Studies, Disabilities (DHSS) University of Delaware DSAMH Division of Substance Abuse and CMS Centers for Medicare & Medicaid Mental Health (DHSS) Services DSCYF Department of Services for Commission Advocate Rita Landgraf and Children, Youth, and Their Co-chairs Secretary Vincent Meconi Families DATI Delaware Assistive Technology DSHA Delaware State Housing Initiative Authority DART Delaware Transit Corporation DSHS Department Of Safety And (Division of DelDOT) Homeland Security DDDC Delaware Developmental DSS Division of Social Services Disabilities Council (DHSS) DDDS Division of Developmental DVR Division of Vocational Disabilities Services (DHSS) Rehabilitation (DOL) DelARF Delaware Association of EDTAC Elderly and Disabled Transit Rehabilitation Facilities Advisory Committee (DART) DHSS Department of Health and Social HUD U.S. Department of Housing and Services Urban Development DICH Delaware Interagency Council on ODA Office of Disability Affairs Homelessness OMB Office of Management and DMMA Division of Medicaid & Medical Budget (State of Delaware) Assistance (DHSS) PHA Public Housing Authority DMS Division of Management Services (DHSS) SCPD State Council for Persons with Disabilities DOC Department of Correction SCTF Sussex County Transportation DOE Department of Education Forum DOL Department of Labor SPO State Personnel Office TBD To Be Determined 22 11 Ticket to Work and Work Incentives Improvement Act of 1999, Medicaid Infrastructure Grants, End Notes Executive Summary (2007). Centers for Medicare and Medicaid Services. 12 Novelli, Bill; Workman, Boe (2006). 1 A Call to Action: Building a Community-Based 50+ Igniting a Revolution to Reinvent America. Plan for Delaware (2003). Commission on St. Martin’s Press. Community-Base Alternatives for Individuals 13 Available online at www.dartfirststate.com with Disabilities. 14 A Call to Action: Building a Community-Based 2 Executive Order 50 (September 22, 2003). Plan for Delaware (2003). Commission on Governor Ruth Ann Minner. Community-Base Alternatives for Individuals 3 Cook MPP, Mary Ellen; Howell-White PhD, with Disabilities. Sandra (May 2006). Delaware Passport to 15 U.S. Department of Health and Human Services. Independence: An Analysis of Programs and Services Mental Health: A Report of the Surgeon General. Provided (2003-2005). Rutgers Center for State Rockville, MD: U.S. Department of Health Health Policy. and Human Services, Substance Abuse and 4 CMS Awards Grants to 13 States for Alternatives Mental Health Services Administration, to Nursing Home (May 14, 2007). Center for Center for Mental Health Services, National Medicaid and Medicare Press Release. Institutes of Health, National Institute of CMS Office of Public Affairs. Mental Health, 1999. www.cms.hhs.gov/apps/media/press/release.asp 16 The Policy Book, AARP Public Policies (2006). 5 A Call to Action: Building a Community-Based AARP Board of Directors and National Policy Plan for Delaware (2003). Commission on Council. Community-Base Alternatives for Individuals 17 The Policy Book, AARP Public Policies (2006). with Disabilities. AARP Board of Directors and National Policy 6 Delaware State Senate. 142nd General Council. Assembly. (2006). S.R. 26. 18 The Policy Book, AARP Public Policies (2006). 7 Finding a Way Home: Delaware’s Proposal to AARP Board of Directors and National Policy Implement MFP — A Money Follows the Person Council. Demonstration Project submitted by the State of 19 Solano, P., McDuffie, M. & Powell, P. (2003). Delaware (November 1, 2006, updated - April Evaluation of Retention, Tenure and Wages of 19, 2007). Governor’s Commission on Direct Support Workers in Developmental Disability Community-Based Alternatives for People Programs. Health Services Policy Research with Disabilities, Department of Health and Group. University of Delaware. Social Services and Division of Medicaid and Medical Assistance. 20 Olmstead v. L. C., US Supreme Court (1999). 8 527 U.S. 581 Ticket to Work and Work Incentives Improvement Act of 1999. Public 21 Finding a Way Home: Delaware’s Proposal to Law 106-170. Implement MFP — A Money Follows the Person 9 Demonstration Project submitted by the State of Ticket to Work and Work Incentives Delaware (November 1, 2006, updated - April Improvement Act of 1999. Public 19, 2007). Governor’s Commission on Law 106-170. Community-Based Alternatives for People 10 Ticket to Work and Work Incentives Improvement with Disabilities, Department of Health and Act of 1999, Medicaid Infrastructure Grants, Social Services and Division of Medicaid and Executive Summary (2007). Centers for Medical Assistance. Medicare and Medicaid Services. 23 The work of the Commission was greatly supported by private and federal financial contributions and in kind services. We greatly acknowledge ETS: Educational Testing Service for their generous donation of printing and publishing services.
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