Top 5 Recommendations for Waiver Reform: 1.

There should be one, robust and comprehensive DD Waiver to serve all Virginians with ID/DD, regardless of the complexity of their support needs. This Waiver should emphasize inclusion, integration and lifespan family support. Rates and structure promote competitive employment, integrated housing, meaningful relationships and community inclusion. Reimbursement should reflect true costs of providing these services.

2. The new ID/DD Waiver should give people the freedom and authority to decide how Waiver dollars are allocated, using individual budgets that are based on support needs and aspirations of the individual. 3. Revise ID/DD Waiver eligibility so that people with mild intellectual and developmental disabilities can access the supports they need in order to avoid institutionalization, homelessness, abuse and neglect. 4. Ensure true budget transparency in the ID/DD Waivers and reinvest cost-savings to improve access to quality, community-based services and eliminate waiting lists. 5. Look at the system as a whole. This begins with improving access to services and streamlining the process of obtaining those services. It also includes a full review of other funding mechanisms that are currently supporting people with ID/DD, including the EDCD Waiver, the Comprehensive Services Act and the EPSDT program.

KEY MESSAGEVirginia must develop a robust and comprehensive DD Waiver that promotes A Life Like Yours-- a home, a job and a life in the community. The new Waiver should improve inclusion and emphasize family support across the lifespan. Waiver rates and structure should promote competitive employment, integrated housing, meaningful relationships and community inclusion. The Waiver must allow the option for individual budgets, which are not only based on support needs, but also the dreams and aspirations of the individual. DBHDS must ensure that any cost savings achieved by systems reformed are reinvested to eliminate waiting lists and strengthen community-based services for people with ID/DD.

BACKGROUND- Current Issues in the ID/DD System: Virginia is currently ranked 45th for its fiscal effort towards community-based supports for Virginians with intellectual and developmental disabilities. This has resulted in long waiting lists

and a lack of truly integrated services, especially for those with the most complex support needs. Virginia has a very long waiting list for community-based services. As of September 2013, more than 6,500 people were on the Intellectual Disability Waiver waiting list and an additional 1,300 were on the Developmental Disability Waiver waiting list. More than half of these individuals are in urgent need. Examples of urgent need criteria include living with an aging caregiver, living with an ill caregiver, risk of homelessness and risk of abuse or neglect. While the General Assembly has funded new ID/DD Waivers each year since 2006, the funding for the waiting list has not kept pace with the growth of the list. An average of 780 new people are added to the ID Waiver waiting list each year and an average of 212 people are added to the DD Waiver waiting list each year. Many of these individuals have crisis needs that require a comprehensive waiver. While Waiver Reform is anticipated to begin in FY15, Virginia has not implemented necessary in the meantime strategies to help people with complex needs live in the most integrated settings. There has been no provision of bridge finding to help facilitate successful transitions from Training Centers to the community, which is especially needed in the Northern Virginia area. There is a high utilization of large group homes (with more than 37% being 7+). Very few people with ID/DD are living in their own home (less than 5%) with the support of an ID/DD Waiver. Very few people are receiving individual supported employment (2.8%) through the ID/DD Waiver program. There is a high utilization of day programs (almost 75%) and sheltered workshops. Individuals with ID/DD and family members report difficulty accessing consumer-directed services, which are many of the services that help people live in their own/family home. Examples of barriers to these integrated services include difficulty obtaining authorizations, delayed payment to direct support professionals, lack of benefits and inadequate reimbursement rates. Providers of services report that reimbursement rates are inadequate and incentivize segregated services. Families report that Virginias service system is difficult to navigate and often they face significant challenges finding the services that they need. Families are left with the burden of navigating multiple agencies, often without the assistance of a case manager or community

guide. Families also report that once they do locate services, the local agencies often provide inconsistent or inaccurate information. There is a lack of budget transparency, especially when it comes to cost savings achieved by downsizing state institutions or moving away from segregated services. There is also is also no state agency ownership of the ID/DD System. Duties related to the ID/DD system are split between the Department of Behavioral Health and Developmental Services (DBHDS) and the Department of Medical Assistance Services (DMAS). This creates confusion and results in a lack of leadership on critical ID/DD issues. There has been a resurgence of the ICF/ID model in Virginia, which is at odds with Virginias stated commitment to promote cost-effective, high-quality community-based services for people with ID/DD, regardless of the complexity of support needs. Individuals with ID/DD, family members and providers report difficulty accessing assistive technology and environmental modifications offered under the Waiver programs. The prior authorization process is often cumbersome and access to providers is very limited. Significant culture change is needed in the Virginia ID/DD system. While many DOJ agreement provisions are in motion, there has been little emphasis on the paradigm shift needed for the day to day delivery of those services. Who is working on this at the local/CSB level? How are case managers getting the message? Who is working on culture change at the provider level? Many Virginians with intellectual and developmental disabilities and family members report that they continue to have difficulty obtaining community-based crisis stabilization and support to prevent crisis. While START has been a good step forward, there is a lack of coordination with CSB emergency service personnel and there continues to be unnecessary hospitalizations and involvement with law enforcement as a result.

There is a heavy emphasis on guardianship in Virginias ID/DD system and little education about supported decision making. In addition, when an individual with ID/DD receives a Waiver, an Authorized Representative is appointed. This Authorized Representative essentially serves as a Guardian in the eyes of state law, even though there is no legal process for appointment of the A.R. Unfortunately, an operating license does not always mean quality. There is a very high threshold for providers to receive provisional license status. There is a low threshold for becoming a new, licensed provider of ID/DD services. Despite many issues reported in the

ID/DD system, very few providers are in provisional status and almost no providers lose their license, even if serious harm or death occurs. Action must be taken to improve safety and quality in the transportation system. There have been many reported cases of abuse and neglect when individuals are using Medicaid transportation. Many Logisticare providers show up late or dont show up at all, which has a big effect on the lives of people with intellectual and developmental disabilities. Despite several attempts to rectify problems, with Logisticare, serious problems with quality assurance abound.

RECOMMEDNATIONS- Waiver Design and Financing: The goal of the ID/DD Waiver Reform initiative should be to create one robust, comprehensive Waiver, for all people with intellectual and developmental disabilities (ID/DD) that promotes inclusion, community integration and lifespan family support. The new Waiver rates and structure should emphasize and promote competitive employment, integrated housing, meaningful relationships and true inclusion. Give people with ID/DD freedom and authority to decide how Waiver dollars are allocated, utilizing individual budgets that are developed based on needs and aspirations of the individual. The new Waiver reimbursement structure should take into account the support needs of the individual and should also reflect regional economic differences. Closely review Virginias ID/DD Waiver eligibility criteria, which continues to be based on admissions to institutions. Current criteria is not relevant, forces poverty and penalizes personal growth after receiving an ID/DD Waiver. We urge the state to consider pursuing the 1915i option, which would eliminate the outdated criteria and could also generate new money to expand the program. Develop mechanisms to capture and report cost savings achieved in the Intellectual Disability (ID) Waivers and the Developmental Disability (DD) Waivers and the Intermediate Care Facility (ICF/ID) programs. Reinvest cost savings to support people with intellectual and developmental disabilities who are on waiting lists for services. If using the Supports Intensity Scale, it should be conducted by independent evaluators who are highly trained to ensure inter-rater reliability. If the SIS is used for individual budgeting, it should be use in combination with other information such as individuals dreams, aspirations and family circumstances (i.e. single parent, family illness).

Local CSB funds should be converted to Medicaid match. New funding should be used to expand HCBS and strengthen services. Overhaul the consumer-directed services structure and reimbursement (personal care, companion, personal care and respite.) Ensure adequate pay for direct support professionals and timely authorization and reimbursement. Allow all other ID/DD Waiver services to be consumer-directed (i.e. residential, day support, etc). Restructure reimbursement so that individuals with intellectual and developmental disabilities can receive ID/DD Waiver supports while they are in the hospital . Dont penalize providers for helping people with ID/DD maximize natural supports (i.e. lack of reimbursement while away from home). Improve access to supports that promote independent living such as assistance with grocery, nutrition, cooking, overnight monitoring, responsive personal care, financial management, medical case management. These supports should be flexible so that they continuously meet the needs of the individual (i.e. individual/family member is sick and needs some extra help). The new ID/DD Waiver should focus on lifespan family support, which is more than just access to respite. It should help people contribute natural supports without losing what they need to live a full life in the community. The new ID/DD Waiver should better help people with intellectual and developmental disabilities to age in place. This means allowing flexibility in supports for people with ID/DD to retire and have ensuring access to specialized medical services. Include peer mentor and community guide as services in the Waiver program, which would help the individuals and families have access to systems navigation and assistance accessing supports. This individual could also ensure system transparency. Improve access to assistive technology, environmental modifications and nursing services . The current process of accessing these supports is burdensome and needs to be simplified. Individuals with complex needs have difficulty obtaining authorization for needed nursing service hours. Strengthen access to in-home services. There are few providers of this service when compared with the number of providers of congregate residential services. Waiver should also better use technology to promote independent living. Re-examine the role of the Elderly and Disabled Waiver with Consumer Direction (EDCD) in Virginias ID/DD service system. This Waiver has essentially functioned as a supports waiver

for over 1,000 people with ID/DD who are on waiting lists but operates in an entirely separate system. Also, the UAI as an instrument used for EDCD Waiver eligibility has not been a good assessment instrument ID/DD population, especially children. To facilitate successful closures and improve community integration for people with the most complex needs, Virginia should provide bridge finding to help people move from Training Centers to the community while the Waiver Reform efforts are being completed. This funding is most urgently needed in the Northern Virginia region. The Waiver Reform study should review Virginias model of providing transportation to people with intellectual and developmental disabilities. The role of Logisticare, as broker of the transportation services, should be closely examined. If Logisticare is retained as the broker of transportation services, safety and QI systems must be put into place and there must be accountability mechanism at both Logisticare and DMAS. Review services related to crisis prevention, response and intervention. Fill gaps within the START model, Waiver and emergency services system. Improve coordination of services to ensure the individual receives the help that is needed. Modify service descriptions to promote more creativity, innovation and integration. Look at promoting microenterprise as an option for supported employment. Use integrated day to promote individualized experiences and true relationships in the community.

RECOMMENDATIONS- Entry, Access and Planning: Establish a single point of entry for all people with developmental disabilities (including ID) to serve as a consistent and reliable source of information for individuals with intellectual and their families. Streamline and standardize process of applying for and accessing supports and services. Revisit current eligibility criteria, which is based on outmoded institutional criteria and prevent crisis by expanding access to supports for people who fall through the cracks. Ensure case managers are equipped to serve all people with ID/DD and their families by providing adequate training on ID/DD services and supports. This should not only include ID/DD Waivers, but also services available to people with ID/DD (i.e. VR, Individual and Family Support, HIPP, EDCD Waiver, etc).

Role of case manager must be examined. Families need help navigating and accessing community-based supports. Current role of case management more focused on gatekeeper, paperwork. How can the system promote better choice within the case management system? Case managers should be funded to allow better coordination of services. Case manager should act as liaison between various agencies that have involvement with the individual (DSS Medicaid Eligibility, DARS, SSI, etc). Currently individuals who need less, fall through the cracks. Individuals who are on waiting lists often receive little assistance finding other sources of support. The case management system must ensure that people with ID/DD are properly linked to services, regardless of Waiver status or eligibility. Support families from the beginning. Consider a registry that begins with pediatricians and/or early intervention system. This could help ensure seamless transitions (i.e. early intervention, school transition, locations, etc). Revisit the process for appointing an Authorized Representative and the role of this AR in service system. Can the role be modified to promote supported decision making instead of acting in role of guardian? How can we instead instill a presumption of competence in the ID/DD system? Adult dental

RECOMMENDATIONS- Systems Management: It is imperative that the Commonwealth get out of crisis mode when it comes to the Intellectual Disability (ID) and Developmental Disability (DD) Waiver waiting lists. To do so, the Commonwealth should fully fund the urgent need waiting list for the Intellectual Disability (ID) and Developmental Disability (DD) Waivers. This should be done on a triage basis, with waivers allocated based on urgent need. Once the urgent list is fully funded, Waivers should be allocated on a first-come, first-served basis to those on non-urgent lists. Transfer all ID/DD waiver and ICF budget authority to DBHDS, which currently serves as the lead program agency for ID/DD Waivers. This will allow DBHDS to effectively manage resources to better serve the population. Dedicate revenue from Training Center closures (including land sale/lease) to helping waiting list families. Clarify the roles of DBHDS and DMAS within the new systems configuration. Who is in charge when it comes to ID/DD services? Who is responsible for the day- to-day budget? Who is documenting cost savings? Who is managing the waiting list and ensuring that cost savings are

reallocated to expand services? These duties should be placed within one agency, instead of split between two. Once a true DD agency, DBHDS should look at the whole picture when it comes to Developmental Disability (DD) services in order to promote community integration and promote cost effective services. How are families using the EDCD Waiver for support? Can cost savings from reducing out of school placements funded by Comprehensive Services Act (CSA) be used for expansion of services to help promote home and community based options? How can EPSDT be better leveraged to maximize support for waiting list families? How are families exiting the school system learning about services that are available to them? How can there be better coordination with the state VR agency? Emphasis should be to move from conflict to collaboration with providers. Work with providers to calculate true cost of providing servicers (i.e. inclusive of staff training, overnight support) and provide reimbursement accordingly. Provide annual cost of living adjustment to ensure reimbursement keeps pace with the cost of providing services and prevent the Commonwealth from falling further behind in quality. Build on what providers are doing well and use financial drivers. Invest resources into the provision of training and technical assistance to support provider conversion and continued provider development. Continuously evaluate quality of the ID/DD wavers and make ongoing adjustments to incentivize development of more integrated services and supports. Use rates to assure top grade providers of services. Make changes to the quality improvement and licensure processes so that the bottom providers are identified, and if necessary, removed on a more proactive basis. Lower the threshold for provisional status and make it easier for DDBHDS to revoke licenses if there is evidence of systemic issues that have resulted in serious harm. If multiple reports identify a similar problem occurring, there should be a process to look at the systemic roots of the problem within the ID/DD system. While there are many stakeholders in the ID/DD system, there should be more interest and dedication to working with individuals with ID/DD and their families as they are the most affected by the quantity and quality of services. Individuals and families should be considered the primary stakeholders in the ID/DD system. The roles of the Community Services Boards should be revisited and clearly defined. There should be transparency of funding allocations and statewide regulations governing the composition of the CSB Boards and the qualifications of ID/DD Directors.? Ensure more consistency in the day to day management of services.

Improve transparency. Data collection and reporting should be proactive rather than reactive. All meeting minutes (including subcommittees/workgroups), program budgets and data reports should be posted in a timely manner on the DBHDS website. As roles evolve, ensure that current funding (local, state and federal) stays in the ID/DD system. Move to an outcomes focus with creative planning for supports. Make sure person centered planning is real, not just pretty paperwork. Put together a spectrum of supports that work together, moving away from paid staff only. Get away from the medical model! Once the Waiver is adequately funded, pursue a process for conversion from the ICF model. Begin with a moratorium on approvals for new ICFs. DBHDS should then be equipped with funding and regulations necessary to assist with the individual conversion of each facility. Initiate culture change initiatives at the state, CSB and provider levels. This culture change should address independent living, supported employment, family support, and selfdetermination and supported decision making.