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Biennial Assessment of the Disability Services System in Virginia

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Biennial Assessment of the Disability Services System in Virginia

2008 Biennial Assessment Virginia Board for People with Disabilities

    I. Executive Summary

    The Virginia Board for People with Disabilities (hereafter referred to as the Board), Virginias Developmental Disabilities (DD) Planning Council, is pleased to provide its 2008

    Biennial Assessment of Virginias Disability Services System. The Assessment is conducted in

    accordance with the Boards statutory authority and responsibility under the Code of Virginia, ?

    51.5-33(2), and the federal Developmental Disabilities Assistance and Bill of Rights Act (P.L. 106-402, 2000) and is consistent with the Boards mission:

    To enrich the lives of Virginians with disabilities by providing a VOICE for their

    concerns.

    Visions of communities that welcome people with disabilities

    Outreach to individuals, families, and advocates

    Innovation through grant projects and sponsored programs

    Collaboration with providers of disability services

    Education of policymakers on disability issues

    As noted in the Preface, the Assessment is primarily but not solely focused on the population of individuals with developmental disabilities. The DD Act defines developmental

    disability as:

    a severe, chronic disability of an individual that: (i) is attributable to a mental or

    physical impairment or combination of mental and physical impairments; (ii) is

    manifested before the individual attains age 22; (iii) is likely to continue indefinitely;

    (iv) results in substantial functional limitations in 3 or more of the following areas of

    major life activity: self-care, receptive and expressive language, learning, mobility,

    self-direction, capacity for independent living, economic self-sufficiency; and (v)

    reflects the individuals need for a combination and sequence of special, inter-

    disciplinary, or generic services, individualized supports, or other forms of assistance

    that are of lifelong or extended duration and are individually planned and coordinated.

    It includes children birth to age 9 who are likely to meet these criteria later in life. Background:

    Federal and state legislation direct the Board to engage in varied activities that include but are not limited to: outreach, training, and education, coalitions building, and helping to guide public policy to effect systems change on behalf of individuals with developmental disabilities. As the Commonwealths DD Planning Council, the Board represents an independent voice and a source of information on many issues affecting its constituents. The Boards work is enhanced

    by its diverse membership, which includes individuals with disabilities, family members, advocates, government officials, service providers, and various private-sector interests.

    Over the past three decades, the Board has provided millions of dollars of federal funding and has leveraged significant amounts of local government and private-sector funding to promote the demonstration, implementation, and replication of policies, programs, and practices designed to move the disability service system forward. The Boards current funding level of

    approximately $1.5 million per year, however, can address only a very small proportion of the Executive Summary 1

Virginia Board for People with Disabilities 2008 Biennial Assessment

    complex issues facing the Commonwealth in its efforts to ensure full inclusion and quality of life for its citizens with developmental and other disabilities.

    The Boards Biennial Assessment process provides an ongoing mechanism to report,

    evaluate, and make recommendations regarding the scope and effectiveness of the state-funded service delivery system in meeting the current and future needs of persons with developmental and other disabilities. As with the 2006 edition, the 2008 Assessment is designed to serve as a resource for individuals with disabilities and their families, legislators, political leaders, policy analysts, advocates, and other stakeholders. Comparative data are provided, when available, for state Fiscal Years (FY) 2005 and 2007, and for multiple fiscal years in some instances. Major New Statewide Initiatives:

    Since publication of the 2006 Biennial Assessment of the Disability Services System,

    many positive steps have been taken to address the needs of Virginians with disabilities. Virginia leads the nation by having a Community Integration Advisory Commission (CIAC) with a

    majority of its members having disabilities. The CIAC was established by statute in 2006 and given responsibility to monitor implementation of the Commonwealths community integration

    activities and to make recommendations to the Governor. In 2007, the Governor issued Executive Directive No. 6 reauthorizing the Community Integration Implementation team,

    comprised of 21 state agencies, local governments, and advocacy representatives. The directive requires collaboration to complete and annually update a comprehensive, cross-governmental strategic plan designed to assure community integration of Virginians with disabilities. A plan

    was submitted in August 2007 that addresses community services and supports, self-direction, employment, housing, transportation, and workforce strategies. The plan, progress of which is monitored quarterly, is designed to both create opportunities for people to leave institutions if they wish and help people in the community avoid unwanted institutionalization.

    Other reform initiatives have begun that will have a significant impact on the quality and scope of community disability services and supports statewide, reduce reliance on institutional care, and strengthen community services. The Commonwealth successfully applied for three major federally funded projects that, together, will reduce the states reliance on institutional care

    and will improve community services capacity. Involvement of Virginians with disabilities is promoted for the workgroups and committees implementing these projects.

    To strengthen community supports, the Money Follows the Person (MFP) Rebalancing

    Demonstration Project will facilitate transition of 1,041 seniors and individuals with disabilities to community placements of their choice over the next three fiscal years (FY 20092011). To

    accomplish this, the MFP Project will enrich services provided under several Medicaid home- and community-based waivers and address housing and transportation needs. Moreover, Virginia has chosen to make permanent all waiver and related system improvements after the project ends. The four-year MFP project, which began in FY 2008, brings $28 million in federal funds to Virginia.

    Virginia also received a Systems Transformation Grant (STG), a Real Choice Systems

    Change Grant for Community Living, through the Centers for Medicare and Medicaid. This five-year grant provides $2.2 million in federal funds to create a statewide No Wrong Door

    portal to be called Easy Access for locating services and supports; foster Person-Centered

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2008 Biennial Assessment Virginia Board for People with Disabilities

    Practices in regulations, policies, and procedures across service systems; and develop a database for monitoring critical incidents and quality assurance, among others. The State Profile Tool

    (SPT) Grant provides funding for development of an outcome measurement tool that will enable progress tracking, including availability and performance, of long-term support services to seniors and persons with disabilities. Virginia will work in collaboration with eight other states in developing this tool, which will ultimately result in national outcome measures on those services. A Leadership Team, comprised of aging and disability stakeholders, has been formed to support and assist all three of these federally funded projects.

    The 2006 budget actions by the Governor and General Assembly included funding to the Department of Medical Assistance Services (DMAS) for the development and implementation of a new Alzheimers Assisted Living Waiver. A reimbursement rate by 3 percent for personal

    care under all waivers and by 5 percent for skilled nursing services was provided through the Technology Assisted Waiver and the HIV/AIDS Waiver. Fiscal support was also provided for

    implementation of the Program for All-Inclusive Care for the Elderly (PACE), administered

    by DMAS, and the Virginia Public Guardianship Program, administered by the Virginia

    Department for the Aging. Additional funding for Home and Community Based Waivers was as follows for each year of the biennium:

    2006 Budget Actions FY 07 FY 08

    MR Waiver slots for Children younger than 6 110 0

    MR Waiver slots for Children 6 and older and adults 115 0

    MR Waiver facility discharge slots for persons

    transitioning from Training Centers to Community 80 69

    DD Waiver slots 65 0

    The Governor and the 2006 General Assembly charged DMAS with developing options for Medicaid reform focusing on care coordination. In response, DMAS collaborated with multiple stakeholders to develop its Acute and Long-Term Care Integration (ALTC) program.

    ALTC is designed to help Medicaid-enrolled seniors and individuals with disabilities remain independent and reside in the setting of their choice for as long as possible through a streamlined primary, acute, and long-term care service delivery system that offers ongoing access to quality health and long-term care services, care coordination, and referrals to appro-priate community resources. ALTC enables persons who have dual eligibility in Medicaid and Medicare, as well as individuals in certain areas of the Commonwealth who use the Elderly or Disabled with Consumer Direction (EDCD) Waiver, to receive both their health care and long-term support services through a single delivery system. During the next biennium, the two initiatives under ALTC, the PACE program and the Regional Model for Integrated Services, will be expanded.

    Under the regional model, individuals will be enrolled in a new managed care program that will offer ongoing access to high quality health and long-term support services, coordinated benefits between Medicare and Medicaid, care coordination, and referrals to appro-priate community resources. Program implementation statewide is targeted for January 1, 2009.

    Two changes to the Code of Virginia became effective July 1, 2007, both of

    which are designed to improve service planning and coordination at the state and local levels. First, the Secretary of Health and Human Resources was established as the lead

    Secretary for the coordination and implementation of long-term policy working in

    Executive Summary 3

Virginia Board for People with Disabilities 2008 Biennial Assessment

    collaboration with the Secretaries of Transportation, Commerce and Trade, and Education, and the Commissioner of Insurance. (? 2.2-212). Second, all local regional

    Planning District Commissions must now include the needs of seniors and persons with disabilities in development of their comprehensive plans. (? 15.2-2223).

    In 2007, the Governor and General Assembly took a number of actions to improve services to individuals with disabilities. The Comprehensive Services Act (CSA) for At-Risk

    Children and Youth was amended to expand eligibility for CSA-funded services to youths whose mental illness or behavioral challenges put them at risk of foster care placement. Localities have raised concerns, however, regarding the cost of serving an expanded population, and at the time of this report numerous CSA legislative and budgetary initiatives, reflecting the complexity of issues surrounding this program, were pending in the 2008 General Assembly.

    Other 2007 budget actions included fiscal support for a number of disability-related initiatives, including, but not limited to: continued development and expansion of the No Wrong

    Door system of long-term care access for the elderly and persons with disabilities, funding for the Program for All-Inclusive Care for the Elderly (PACE), and increased financial support

    to Centers for Independent Living and brain injury services. The personal needs allowance

    for nursing home residents was increased from $30 to $40 a month. Southside Virginia and Southeastern Virginia Training Centers were each appropriated $200,000 for Regional

    Community Support Centers to provide outpatient services.

    The 2007 General Assembly approved a 10 percent reimbursement rate increase to

    providers of congregate residential group home services for individuals using the MR Waiver and a 15 percent rate differential for services provided in Northern Virginia under the MR, DD, and Day Support Waivers. As a result of individuals transitioning from training centers to the community at a slower rate than anticipated, moneys for 32 of the 80 MR Waiver facility

    discharge slots approved during the 2006 session were reallocated to fund the MR Waiver for individuals residing in the community. Additional funding for new Waiver slots was also provided for the final year of the biennium as follows:

    2007 Budget Actions FY 08

    MR Waiver Slots 330

    DD Waiver Slots 100

    Including the aforementioned reallocation of facility slots, total actual Waiver slot

    allocations for FY 2007 and 2008 were:

    Final Waiver Slot Allocations for 2007/2008 FY 07 FY 08

    MR Waiver Slots for Children younger than 6 110 0

    MR Waiver slots for Children 6 and older and adults 145 399

    MR Waiver facility discharge slots 48 69

    DD Waiver slots 65 100

    In spite of the economic downturn, the 2008 General Assembly approved additional support for disability services. An additional $200,000 was approved for brain injury services;

    $5,000,000 was appropriated for each year of the biennium to increase by 3.6 percent

    reimbursement rates paid to MR Waiver congregate residential group home providers. 4 Chapter I

2008 Biennial Assessment Virginia Board for People with Disabilities

    Funding for MR and DD Waiver slots for the FY 20092010 biennium was approved as

    follows, pending final action by the Governor (on the budget as a whole):

    Pending 2008 Budget Actions FY 09 FY 2010

    MR Waiver Slots for Money Follows the Person 75 75

    DD Waiver slots for Money Follows the Person 30 0

    MR Waiver slots (phase in over biennium) 600 0

    Despite significant growth in the DD Waiver waiting list, no additional funding was appropriated for DD waiver slots other than the very limited number targeted to the Money

    Follows the Person initiative. This again demonstrates the necessity of a state agency to address the needs (funding, policy, planning, and programmatic) of individuals with developmental disabilities as a whole, not just those with intellectual disabilities. In addition, while the addition of 600 MR Waiver slots appears substantial, the rate of state funding compared to the rate of waiting list growth assures that the Commonwealth will continue to lag significantly behind identified need.

    Positive developments are underway. The Department of Rehabilitative Services has implemented a three-year federally funded Partnership Implementation Grant that focuses on

    strengthening the states infrastructure for the provision of services to this often-underserved and unidentified population. The Joint Commission on Health Care (JCHC) and the legislative Disability Commission have taken a significant interest in ensuring that the needs of persons with autism spectrum disorders are served. A JCHC stakeholder workgroup met during 2007

    to discuss creation of a state office that would serve persons with autism. The workgroup recommended that the Secretary of Health and Human Resources be asked to develop an implementation plan that would determine the agency to serve this population and whether the responsibility should be expanded to developmental disabilities rather than just autism. Budget language for the implementation of this plan was not passed by the 2008 General Assembly; however, a legislative study on best practices in autism was passed and will be conducted by the Joint Legislative and Audit Review Commission (JLARC).

    Despite these encouraging developments, Virginias service system for persons with

    disabilities still has significant shortcomings that must be addressed by its citizens, policymakers, advocates, and providers. As seen at the end of each chapter, the Board has attempted to identify the most significant issues affecting persons with developmental disabilities. The Board recognizes that, in all likelihood, this Assessment has not addressed all of the issues that its constituents would deem important, and that it has raised issues with which some individuals, agencies, or organizations would not agree. The Board hopes, however, that productive discussion of these issues and recommendations will occur and will promote continued movement toward positive system change. The following brief summary highlights progress and improvements as well as key areas of concern reported in each chapter.

    Progress and Concerns:

    Early Intervention Services addressing the needs of infants and toddlers with disabilities have expanded and improved. From FY 2003 to 2008, the General Assembly provided significant increases in financial support for Part C services, raising the annual General Fund allocation from $125,000 to $7,203,676. Between FY 2002 and 2006, the number of infants and Executive Summary 5

Virginia Board for People with Disabilities 2008 Biennial Assessment

    toddlers served under Part C increased by 12 percent; however, these increases have not been proportionate with the level of increased funding. The Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS), responsible for Part C administration, is engaged in strengthening oversight and improving both fiscal and program data collection. Solutions Consult Group, Inc., under contract to DMHMRSAS, has a conducted comprehensive study of the Part C system and has made numerous recommendations for programmatic and fiscal improvements. DMHMRSAS has provided training and technical assistance throughout the Commonwealth, and compliance on several key indicators of services to children has improved. That the number of infants and toddlers served in their natural environment now stands at 99 percent is one such notable improvement. Despite these efforts, however, Virginia still lags behind other states in the percentage of eligible children served, particularly those served between birth and age one. Service variability among localities remains a challenge as does provider shortages.

    Education: Between FY 2006 and 2007, funding for special education services for

    students with disabilities increased by 15 percent. The State School Report Card for 20062007

    indicates that only 3 percent of core academic classes were taught by teachers not meeting the federal definition of highly qualified, although the percentage was higher (5 percent) in high

    poverty areas. A positive development was the revision by the State Board of Education of Virginias Licensure Regulations for School Personnel (8 VAC 20-22-10 et. seq.). As a result of

    this change, described in more detail in the Education chapter, a broader pool of educators will be available to work with students who have diverse abilities and needs. VDOE has also continued a focus on better measurement of educational outcomes of students with significant disabilities and on improving services to students with autism. Among the many continuing challenges affecting families and students with disabilities are access to the general curriculum by students with severe disabilities, appropriate inclusion of these students in the states

    accountability system, receipt of services in the least restrictive environment, low graduation rates, disparity in achievement as compared to students without disabilities, and access to assistive technology.

    To address 2006 changes in federal regulations, the VDOE has obtained, and continues to seek, public comment on its draft revision of Regulations Governing Special Education Services

    for Children with Disabilities. The current draft includes some positive provisions such as

    maintaining age 14 as the point at which transition services must be provided. The proposed regulations, however, also have provisions of concern to the Board and families including, but not limited to, those that permit school staff members to be voting members of Local Advisory Committees and that eliminate the requirement for parental consent for partial or full termination of special education and related services.

    Community Living Supports: Since fiscal year 2005, increasing numbers of Virginians

    with disabilities have been able to gain access to services in the community rather than in institutional settings. As noted earlier, 2006 budget actions significantly increased funding enabling Virginians with disabilities to maintain natural supports in their communities. Most important, the number of individuals with disabilities served under various Medicaid Waivers increased as a result of new allocations. New Medicaid services targeting the elderly have been implemented. The Virginia Assistive Technology System (VATS) expanded its AT recycling network to provides AT equipment to those who otherwise cannot afford it. From FY 2005 to 6 Chapter I

2008 Biennial Assessment Virginia Board for People with Disabilities

    2007, the number of persons with intellectual disabilities who received services through Community Services Boards increased by 6.8 percent. During that same period, the number of people served under the Public Guardianship and Conservatorship Program more than doubled, the number of youth served under the Comprehensive Services Act (CSA) increased by 13.6 percent, and the number served under the Department of Rehabilitation Services (DRS)

    Community Rehabilitation Case Management program increased by 10.5 percent.

    Despite more people being served, the disability service delivery system remains underfunded to meet current needs, and progress is threatened by the 2008 economic downturn. A major challenge is the growing waiting lists for the MR and the DD Medicaid Waivers. From 2005 to 2007, the number of persons on the DD Waiting List more than doubled, increasing from 284 to 591 individuals, and those on the MR Waiting List increased by 7.2 percent. Moreover, according to DMHMRSAS data, since July 2004, the number of persons on the MR Urgent

    Waiting List has grown by more than one person per day. For persons with brain injury, from FY 2005 to 2007 the waiting list for the DRS Personal Assistance Services grew from 7 to 54 individuals. Funding for state agency staff members to provide licensure and quality assurance oversight, essential to ensuring citizen safety and service effectiveness, has not kept pace with increases in the level of community services. Both workforce development and expansion of service capacity will continue to be critical areas for funding. System fragmentation, low provider rates, inadequate person-centered practices, and the lack of a designated agency for developmental disabilities remain significant obstacles to effective planning, coordination, delivery, and oversight of state-funded services.

    Institutional Supports: Trends in this area have been mixed. Between FY 2004 and

    2007, the number of youths younger than age 21 served in nursing homes/facilities declined significantly, but the number of residents increased by 4 percent overall, primarily among adults ages 2164 years. According to the DMHMRSAS Comprehensive Plan for 200814, efforts are

    underway to effect a cultural transition at state-operated Training Centers toward providing

    time-limited care of less than one year to individuals with intellectual disability and co-occurring mental illness or behavioral challenges. At state Training Centers between FY 2005 and 2007, the average daily census decreased by 7 percent, and the number of operational beds, by 4.8 percent, with almost all of the decline limited to Central Virginia and Southside Virginia Training Centers, the two largest and oldest facilities. Annual per capita costs for state Training Centers rose significantly (15 percent) during that time period. A lack of ongoing discharge planning and the restrictive ready for discharge criteria that apply to persons residing in

    Training Centers are obstacles to transitioning facility residents into the community.

    By comparison, between FY 2005 and 2007 the number of non-state-operated ICFs-MR statewide increased from 25 to 31 (24 percent), while annual per capita costs rose by 30.9 percent. Inadequate and sometimes inaccurate information is provided to families and guardians regarding community options, and there continues to be a widespread misperception that persons with significant disabilities, particularly those with complex medical needs, cannot be served in other than an institutional setting.

    Health Supports: During the past two years, health care has received considerable

    attention. Challenges in health care include a shortage of medical and dental providers willing and able to work with individuals with disabilities, as well as attitudinal and cultural barriers. Executive Summary 7

Virginia Board for People with Disabilities 2008 Biennial Assessment

    Coordination and continuity of care is problematic, particularly for persons with developmental disabilities who have co-occurring medical or mental health conditions, and user-friendly information related to health care and disease prevention is not readily available to persons with disabilities and their families. In 2006, through a federal grant and seed money from DMHMRSAS, Medical Home Plus was created in Central Virginia to improve care coordination for children with disabilities and special health needs. Medical Home Plus has continued its efforts on behalf of families and children through a coalition involving pediatric practices, Care Connection for Children, Family Voices, Parent to Parent, the Department of Health, and the Virginia Chapter of the American Academy of Pediatrics. In 2007, a dental summit and two major conferences were held, both of which addressed improving medical care to individuals with disabilities. The Governors Commission on Health Reform conducted a comprehensive

    study during 20062007 and, after receiving considerable public comment, published its report in the fall of 2007. This report identified major trends and issues in areas that included, but were not limited to, workforce development, prevention, long-term care, and transparency, and made numerous specific recommendations on how to improve service delivery in the coming decade.

    Community Housing: A number of agencies are collaborating to improve the

    availability and accessibility of housing for individuals with disabilities in Virginia. Work is being done under the auspices of the Office of Community Integration, the Money Follows the Person Demonstration Initiative, and the Statewide Council on Independent Living. Projects supported by the Virginia Board for People with Disabilities include the Housing and Transportation Alliance and the EasyLiving Home voluntary certification program, described in the Housing chapter. These efforts have all generated important public-private partnerships throughout Virginia. Another positive development was action by the 2007 General Assembly to expand and rename an existing visitability home modification tax credit to include new home

    construction that meets specific universal design requirements.

    Despite these positive initiatives, waiting lists for Housing Choice Vouchers remain large, 6,633 as of November 2007, and the majority of local public housing authorities (PHAs) have stopped taking applications for this program. Based on DMHMRSAS data, the Static Capacity for Community Services Boards intellectual disability residential services increased only 2

    percent between FY 2005 and 2008, and the length of wait time ranged from nearly a year (49.5 weeks) for Supported Residential Services to a little more than two years (106.4 weeks) for Intensive Residential Services. Overall, affordable housing options are extremely limited, particularly for accessible housing. Housing continues to be frequently linked to receipt of services, limiting choice and fostering a medical model for service delivery. Some communities remain resistant to the development of housing for people with disabilities (e.g., group homes), and fair housing complaints based on landlord bias show that disability discrimination is now the cause of most claims.

    Transportation Services: Reliable, accessible transportation is essential to Virginians with disabilities not only to obtain and keep basic services but also to participate fully in community life. Lack of reliable transportation is also a key barrier in the ability of individuals with disabilities to obtain or maintain employment. Statewide, public and paratransit trans-portation services are often inadequate, especially in rural areas. Quality assurance problems remain for transportation provided under the Medicaid brokerage system. Coordination between housing and transportation planning and overall service capacity are inadequate and the lack of 8 Chapter I

2008 Biennial Assessment Virginia Board for People with Disabilities

    uniform, consistent data collection regarding existing transportation resources and both capital and operational costs is a key system challenge. Establishment of a Memorandum of Understanding (MOU) related to Coordinated Human Service Transportation in Public and Nonpublic Transit Systems in 2007 was a notable step forward. Signed by both the Secretary of Transportation and the Secretary for Health and Human Resources, this MOU requires all state agencies funding transportation for persons who are elderly, have low income, or have disabilities to participate in an Interagency Coordinating Council tasked with improving transportation coordination and services as well as reducing duplication. It also requires development, implementation, and monitoring of work plans designed to meet those goals.

    Employment Services: Coordination among the many agencies responsible for

    employment or employment training activities remains a challenge. Employment statewide remains low with approximately two-thirds of adults ages 1864 with disabilities not employed.

    Vocational services provided by the Department of Rehabilitation Services (DRS) have been under an Order of Selection since 2004, and during FY 2007 and 2008 service eligibility was limited to those individuals with significant disabilities. Virginia lags behind other states in its support of customized and supported employment opportunities, maintaining numerous facility-based, sheltered programs. Financial disincentives for employment remain, and fewer than anticipated have enrolled in Medicaid Works, the Buy-In program designed to enable individuals with disabilities to be employed and maintain their Medicaid benefits. Physical and program accessibility at many of the Workforce Board One-Stop centers remains inadequate. Since 2006, however, the federally funded Disability Program Navigator (DPN) initiative has successfully assisted some One-Stop Centers in becoming fully accessible and has enhanced employment services and outreach to individuals with disabilities. DPN funding ends in FY 2008.

    In other positive developments, the Governor issued Executive Directive No. 8 in the fall of 2007, requiring all executive branch agencies, including institutions of higher education, boards, and commissions, to review relevant hiring practices and to expand existing efforts for

    recruiting, accommodating, retaining and advancing people with disabilities for positions available in state government. Executive branch agencies must annually report on efforts to

    hire persons with disabilities and to appoint them, as appropriate, to boards and commissions. An important step was taken by the 2008 General Assembly to eliminate the significant disparity between the supported employment rates paid under Medicaid home- and community-based waivers versus the much higher rates paid by the vocational rehabilitation system. Passage of budget language requires that the Department of Medical Assistance Services (DMAS) realign

    the rates paid for individual supported employment provided under Medicaid home- and community-based waivers to the same level paid by DRS to employment services organizations. This change, effective July 1, 2008, also requires that DMAS change its rates whenever DRS does so.

    Advocacy and Information Resources: To ensure accessibility, availability, and

    affordability of needed disability services, effective advocacy services across the individuals life

    span are essential. Many organizations work effectively to provide information and technical assistance and to help individuals with disabilities and their families participate in community life and maintain natural supports. Individual advocacy resources remain limited, however, because of both fiscal and program eligibility constraints. Noteworthy progress has been made to involve individuals with disabilities and advocacy groups in planning and developing services, Executive Summary 9

Virginia Board for People with Disabilities 2008 Biennial Assessment

    as exemplified by the system transformation efforts led by the Office of Community Integration, the Department of Medical Assistance Services, and the Department of Mental Health, Mental Retardation and Substance Abuse Services. Adoption of person first language more respectful

    of people with disabilities in state laws and regulations is being pursued. As a result of excellent work by self-advocates, the 2008 General Assembly passed a bill that would change references in the Code of Virginia from mental retardation to intellectual disability. The change, however, is contingent on the bill being passed again by the 2009 General Assembly.

    Public comments received by the Board indicate that with respect to information resources, state agency Web sites offer challenges. They were found by persons with disabilities and family members to be complex, use bureaucratic jargon, or have outdated information. Since laws, regulations, policies, and practices change over time, state agencies and organizations must consistently provide accurate, reliable information to individuals and their families about their rights and about available resources, best practices, and community opportunities.

    Emergency Preparedness: In light of growing state and national efforts to address

    response to natural and other disasters, this edition features this new chapter. During FY 2006

    2007, progress occurred at many levels to improve inclusion of persons with disabilities in developing emergency plans and in sheltering-in-place. In 2006, considerable efforts were made to include individuals with disabilities in statewide Community-Based Emergency Response Seminars held by the interagency delegation to the Working Conference on Emergency Management and Individuals with Disabilities and the Elderly. The Virginia Department of Emergency Management (VDEM) continues to promote participation by people with disabilities in the creation of policies and procedures that will affect them. VDEM also created a Vulnerable Populations Committee, chaired by Disability Services Agency staff members. The Office of Commonwealth Preparedness has assembled regional teams that include individuals with disabilities to develop preparedness and shelter plans.

    Emergency preparedness activities are evolving, but improvements are still needed. Individuals with disabilities and advocacy organizations still are not systematically engaged in discussing the contributions that they can make in emergency planning and, typically, have not been invited to participate actively in planning and conducting disaster response training exercises at the local, regional, or state levels. More opportunities are needed to bring together individuals with disabilities and emergency response and public safety personnel with direct evacuation and sheltering experience so that they can share knowledge and lessons learned.

    The availability and mapping of shelters meeting uniform standards remains an issue, and much work must still be done to plan shelters for individuals with specialized medical needs. Lack of adequate transportation options for individuals with disabilities living in the community and residing in congregate settings remains a continuing gap and a critical need. Additional public education on personal emergency plans and available resources is needed for all citizens. Recommendations:

    In this Assessment, the Board states concerns and makes recommendations addressing them not simply to improve the quality and scope of services for Virginians with disabilities, but also to promote sustained movement toward a comprehensive continuum of community care. It is unnecessary and would be redundant for this Executive Summary to review and describe all of 10 Chapter I

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