support the VAA Comments on DD Waiver Regulations & adding caregiver age to Priority One List I support the VAA Comments on DD Waiver Regulations listed below. I also fully support the the consideration of a caregivers age to be added back in to be added to the Priority One Waiting List. As a mother of a 36 year old lovely daughter with Autism, I have experienced first hand the difficulties she experienced in transitions through her life. Changes have required discussions way in advance at times, social stories, pictures, and planning ways to decrease negative behaviors that result as The Arc of Northern Virginia and other disability advocacy organizations in Northern Virginia routinely meet to share information and concerns. This coalition of organizations is named The Virginia Ability Alliance, and we focus on ensuring all people with disabilities are living a full life in their homes and communities. Our organizations collectively serve many thousands of Northern Virginians with developmental disabilities (DD) and their loved ones. On a frequent basis, we all field inquiries about Medicaid Waivers and the cadre of DD service options in Virginia. These contacts with families have helped us learn a tremendous amount about how the previous regulations for the Waivers and the current emergency regulations have impacted the ability of people with disabilities to access critical services and supports. The new regulations and Waiver system are a significant improvement from the previous system. Having seen the new regulations in use since fall 2016 has given us the opportunity to find ways in which they could be further improved. The comments below are representative of our joint concerns with the current regulations and, where appropriate, include proposed remedies to the issues cited. We look forward to working closely with DBHDS at every opportunity to assist in having needed adjustments made to the DD Waiver Regulations. The DD Waivers Waiting List Though the funding for DD Waivers is beyond the control of DBHDS, the long and continuously growing waiting list to access the DD Waiver is a foremost concern of our organizations. We would support any consideration of a contract that would not allow a waiting list for basic care services. For individuals on the waiting list, we have growing concerns about the age of the primary caregiver(s) not being considered in assessing waiting list priority. Since the new regulations have been in effect, we have seen rapidly growing panic from aging caregivers who no longer qualify for the Priority One waiting list due to age. It creates tremendous stress for the caregivers and loved ones. We have done ourselves a disservice in planning as it is obvious that caregivers in advanced age, no matter how healthy, are going to reach a point in the near future when help is critical. The removal of this eligibility for Priority One reduces the odds that the person with a disability will be able to access services before their caregiver dies. This is setting up the person with a disability for a series of rapid crises, as they lose parents, navigate the service system, and, in many cases, move to access services they need. We propose that the age of the caregiver again be considered as a factor in determining eligibility for Priority One of the waiting list. The terminology used in association with the Priority tiers is confusing and misleading. To explain these categories in terms of years someone could be expected to wait for services furthers the notion that our system will always have multiple years of wait time for assistance. It frames our future in a negative light and is disrespectful to people who are eligible for assistance immediately, but who have been failed by our state’s continuous failure to budget appropriately. Additionally, the usage of years of wait time confuses families who often feel it is a guaranteed maximum waiting time. For individuals who need to transfer from one Waiver to another Waiver offering a higher level of services, urgency of need should be taken into account. Though anyone in this situation is in need, there are people on that list who have emergency needs (e.g., death of all caregivers or behavioral crises) and people who need a higher level of service but may be able to wait a short period of time (e.g., parent who is struggling to lift them and perform needed personal care at home). A system to assess that urgency and award reserve Waiver slots accordingly would be a better solution. If no one is currently on the reserve list at a given CSB when a slot becomes available, that slot should be made available to the person highest on the Priority One waiting list. Assessment for services The DMAS-62 form that scores someone’s medical needs and eligibility for hours of nursing care under the DD Waiver system does not include all possible medical needs. Some people with complex and unusual needs are not able to get nursing hours their care team recommends, as the needs are not reflected on the form. The regulations should clarify that the advice of the providing medical team should be taken into account in determining nursing hours. There is heavy reliance upon the Supports Intensity Scale (SIS) in determining service availability, with all indications that such reliance will increase in the future. Like all assessments, it is imperfect in seeing the full picture of someone’s life. Because specialists (e.g., medical and behavioral providers) have invaluable insights into the support needs of individuals they serve, their written statements should be taken into account, along with SIS responses, to determine final SIS scores. SIS scores should be able to be appealed when the SIS fails to take into account critical care information not captured in the assessment. Waiver and Service Eligibility People with the DD Waivers do not have the option to “spend down” income over the Waiver income cap on medical expenses to demonstrate eligibility for Waiver. The net result is that people with either high earned or unearned income are ineligible for the DD Waivers. As we see the generation of baby boomers retiring and SSDI payments to adult children reaching and exceeding the limits of financial eligibility, it would be wise to amend the DD Waiver Regulations to allow a “spend down” option similar to that allowed under the CCC Plus Waiver. Additionally, regulations should protect eligibility for anyone who is put over the monthly income cap as a result of SSDI received from parents. This benefit cannot be refused, despite the wishes of the person with a disability, yet it can have the effect of making them ineligible for crucial services they cannot afford. Service Conflicts The proposed Waiver regulations prohibit the same person from receiving both Private Duty Nursing and Skilled Nursing. This has been a concern for families whose loved ones using Waivers have significant nursing needs that require ongoing nursing care through PDN, but also significant skilled oversight that realistically only comes with a nursing case manager. If the regulations were to allow limited hours of Skilled Nursing for those people whose nursing needs are beyond what can reasonably be covered with the limited oversight funded in the Private Duty Nursing rate as demonstrated by history, it would prevent institutionalization for some of the most medically at-risk individuals in our system. The proposed regulations do not allow personal care to be billed in conjunction with skilled nursing. For individuals who receive both services, this is a challenge. It is not reasonable to ask that an individual with Waiver having a nursing come for a brief nursing visit would be able to have their personal care attendant leave during that time and return once the nurse leaves, or to sit by without pay during the visit. The problem is compounded as personal care attendant is the person who will be able to provide private personal care that the nurse may not be best suited to giving during the visit. We suggest allowing some overlap of billing for times when skilled nurses are making brief visits and regularly scheduled personal care is still needed. The Waiver regulations allow the use of personal care attendants in combination with group or individual supported employment, unless the individual is living in a group home or sponsored residential situation. This loophole creates an unnecessary hurdle to accessing employment for people living in either group or sponsored residential situations. Regulations should clarify that, for individuals needing a personal care attendant with them while accessing community guide services, service overlap should be allowed as the community guide does not provide personal care supports. For similar reasons, community engagement should allow for the simultaneous provision of personal care services. Service Definitions and Regulations The eligibility for center-based crisis and community-based crisis services mandates a history of involvement with psychiatric hospitalization, incarceration, a loss of residential or day placement, or behavior at risk of jeopardizing “placement.” The terminology about a “jeopardized placement” does not clearly reflect risks to individuals living in family homes, which is not “placement” in the general usage of the term. The regulations should be amended to clarify that individuals living in family homes with behaviors making those living environments unsafe are eligible. The allowable usages of Environmental Modifications are quite narrow, not taking allowing changes needed for safety, including items like keypads on doors to prevent individuals from eloping. These and other safety-based modifications are critical to allowing many individuals to access their communities and safely live at home. Individuals who are best served with the Supported Living service are experiencing difficulties in finding a suitable option as they often need a housing voucher for affordability reasons. However, the regulations mandate Supported Living residences be provider owned/licensed, thus incompatible with housing vouchers. We would like to see an adjustment made to allow the use of the two options together. The current regulations only allow customized rates in group day and residential services. Individuals with comparable needs, but using more integrated services (e.g., employment, in-home private duty nursing) cannot access customized rates and have challenges getting the services they need. Customized rates should be available for any service that cannot be provided with the base rate due to the exceptional needs of the individual. At a minimum, this should include all employment and nursing services. The regulations disallow parents of a minor children from being paid caregivers. Since residential services are only available to adults, this regulatory hurdle complicates efforts to get children out of nursing homes and Intermediate Care Facilities (ICF) and increases the chances other children will access these institutional settings in the future. In our personal experience, many of the kids at the Iliff Nursing Home for children are there because the families were well informed about Waivers. Many of those families have a very low household income and/or limited-English proficiency, making navigating the many complexities of the Waiver infinitely harder. Allowing these families to be paid to take care of their children at home would open up options for many of those children to be discharged. The reality of hiring care attendants for people with complex needs is that families will struggle to identify adequate staff and there will be gaps in service. This makes it impossible for families with all working parents and inflexible jobs to support children with complex needs at home. This can be remedied if children can have paid parent caregivers. Justification should be provided demonstrating this need, with automatic eligibility for children in or at risk of nursing home or ICF placement. Current rules and regulations prohibit lawful current Virginia residents from accessing DD Waiver services while they are living outside of Virginia, as is the case for Foreign Service families, military families, and students with disabilities attending school in another state. These families have the option to stay on the waiting list while they are out of the area, but do not have the ability to accept services if offered as they do not have the option to choose where they are stationed (and in the case of college students, often do not have the option of attending simply any college or university). We support an adjustment to the regulations to allow people to use consumer directed personal care services when living outside of Virginia as long as they maintain Virginia residence, while using technology-based options for “face to face visits.” They would allow Service Facilitators and Support Coordinators to have visits and inspect the home environment. The BI Waiver does not allow for Personal Care Attendants or crisis support services. Additionally, many “Tier 1” individuals receive the BI Waiver and are then only eligible for up to 10 weekly hours of Independent Living Services. These limits can prevent individuals who would otherwise thrive with this Waiver from accepting it. The use of limited Personal Care hours and crisis support services would make this Waiver a realistic option and increase independent living. Under the regulations, Assistive Technology vendors cannot add a markup to purchases. The result is that it became incredibly difficult to find AT vendors, let alone a choice of vendors. Allowing the 30% mark-up to be reinstated would help in service availability. The regulations do not allow more than 24 hours of billing overlap for job discovery while someone is accessing a day service. It can take much more than 24 hours to find the correct job and work with an employer on job prep, such as customized employment. This minimum should be increased to further remove barriers to employment. Support Coordination and Service Facilitation Despite many efforts to move our system to one where people with developmental disabilities and intellectual disabilities are treated equally, there continues to be a divide in relation to Support Coordination. Prohibiting people from accessing the full range of Support Coordinators because of their IQ does not make sense, nor is it fair or equitable. We would like to see the regulations for Support Coordination to be identical for all people eligible for the DD Waivers, including the option for privately contracted Support Coordinators. The eligibility criteria listed to receive Support Coordination and other services for individuals with developmental disabilities states the child must be at least six years old. Given that the state has adopted the federal definition of developmental disability, which has no age minimum, the regulations should be adjusted to remove any age minimums for service access. Under the proposed regulations, Community Service Boards (CSBs) are allowed to operate as service providers, even in cases when families have no choice but to select a CSB Support Coordinator. There is a clear conflict of interest if the person responsible for helping to evaluate and select service providers is also a provider. Recognizing that some areas have a dearth of service providers, we suggest a phase out period during which CSBs should step away from the direct provision of DD Waiver services and/or a move that would prohibit CSB Support Coordination if the CSB was also the Service Coordinator. Early presentations on the redesign stated that a 10 day grace period would be offered for in-person visits, including Support Coordinators and Service Facilitators. That grace period is critical. There are times when a family experiences an emergency, weather intervenes, or a Support Coordinator must manage a crisis and a visit must be rescheduled. The 10 day grace period allows for those visits to be rescheduled without undue stress and burden on individuals and their support team. The grace period should only be used as needed and should include written justification for its usage. Currently, if an individual moves from one CSB to another part of the state and begins to receive Support Coordination from their new CSB, their original Support Coordinator must continue to provide face to face visits until the individual stabilizes. Given the size of the state, in some cases this means Support Coordinators are spending more than a full day a month driving to do a single visit, sometimes for months on end. Additionally, for an individual moving a significant distance, a Support Coordination who is based near their old home cannot be available in person for crises and will be without a known network of support providers. The regulations should be adjusted to allow EITHER an immediate transfer from one Support Coordinator to another when an individual moves more than 100 miles (or equivalent distance in time) OR technology-based visits until such transfer can occur. At least one CSB is offering families the option to receive Consumer Directed services without a Service Facilitator, if the family is willing to act in that role without pay. Regulations should clarify whether or not this is allowed, and in what circumstances. Miscellaneous Page 25 of the proposed regulations uses the term “Elder or Disabled with Consumer Direction Waiver” and “Technology Assisted Waiver” instead of using the terminology for the new Commonwealth Coordinated Care Plus Waiver. Though we understand the rationale behind allowing providers of certain residential services to bill for 344 days per year and receive 365 days worth of funding, it has created significant barriers for providers. Providers must guess at the beginning of the plan year when vacations or out-of-home time will happen, as it is not consistently planned a full year in advance, so they can balance out planning and billing. Otherwise, they risk getting to the end of the year and finding they cannot bill for three weeks of the final month of the plan year. This is a real hardship, especially for Sponsored Residential providers who often serve one individual and receive Waiver reimbursement as their sole source of income. Instead, allowing providers to go without reimbursement for up to two days per month and recoup that income at the end of the plan year based upon days actually spent out of the home would help level off the income dips and offer some safeguards. As Waiver prohibits individuals from billing more than a year after a service is received and sometimes denials for insignificant reasons occur, a policy to allow this option with a grace period for the billing would be an appropriate solution. Closing The task of redesigning the DD Waivers, writing and editing new regulations, and overseeing our DD service system is massive and daunting. We are truly grateful for the staff dedicated to working hard to make things run smoothly and ensure people with disabilities can access needed services. We hope these suggestions are seriously considered and implemented. We look forward to being part of the collaborative team that continues to improve services for individuals with developmental disabilities in Virginia.