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A_Path_Forward

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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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