To Whom It May Concern,

On behalf of the Developmental Disabilities (DD) Committee of the Arlington Community Services Board, I am writing to support the extensive comments and recommendations of the Virginia Abilities Alliance (VAA) regarding the current Medicaid Waiver structure, and to highlight specific areas of concern. 

The Arlington DD Committee consists of the families of clients who receive Waiver services, who are on the waiting lists, and whose members are not eligible for waiver services. In addition, a number of day, employment, and residential services providers regularly attend our meetings, adding an important provider perspective. The comments below align with recent discussions during our meetings combined with the experiences of individual families.  They are listed in priority order:

• Criteria for Priority 1 on the Waitlist.  We strongly recommend reinstating caregiver age as a criterion on the Priority 1 waitlist. The elimination of age as a qualifying factor has put the current generation of aging parents in the alarming position of waiting for a health crisis, incapacitation, or even sudden death, before their adult children can transition to waiver services. We were informed that the priority list was developed by a working group of stakeholders. However, it clearly was not developed by a group that included the aging parents who were removed from the former urgent needs list, after years of waiting under the previous rules. These aging parents were on the front lines of deinstitutionalization and were the first ones to decide that their children were better off at home than in the institutions (see pages 1-2 of the VAA comment letter).
• Job Discovery. New Workforce Innovation and Opportunity Act (WIOA) regulations have eliminated sheltered workshops and clustered employment opportunities. This has had the effect of moving some people who were previously employed into more expensive day programs. Job discovery is an evidence-based practice, cost-effective that can help individuals find their potential for paid work. The limitation of 24 hours of billing for this service for individuals receiving day support limits an important bridge to employment, and is likely not cost-effective (page 5 of the VAA letter).
• Reserve Waiver Slots. We endorse the VAA’s recommendation that reserve waiver slots be allocated on the basis of the most urgent needs, instead of time on the waitlist.  In addition, we ask that DBHDS establish an appeal or recourse process for individuals whose requests to move from a lower-service to a higher-service waiver are denied (page 2 of the VAA letter).
• Supported Living Services. Olmstead requires that individuals should be allowed to live in the most integrated settings possible. In Arlington, we are increasingly seeing situations where individuals choose to live in their own apartments, using the Housing Choice Voucher or other rental assistance, with the support of licensed residential service providers. Therefore, requiring that a home be owned/operated by a licensed provider in order to receive these services constitutes a barrier to integrated, community-based living arrangements (page 4 of the VAA letter).
• Concurrent Billing for Skilled Nursing, Private Duty Nursing, and Personal Care Attendant. These are three different services that need to collaborate and work together in order to ensure the health of a client. The person who provides personal care should be present while a client is being seen and/or monitored by a nurse. The skilled nurse overseeing the work of a private duty nurse needs to be in the same place at the same time. These regulations don’t make sense and can jeopardize care for our most fragile clients, forcing them into institutions (page 3 of the VAA letter).
• Concurrent Billing for Personal Care Attendants with Group or Individual Supported Employment. The current regulations disallow billing for personal care attendants for supported employment if the person lives in a group home or sponsored residential situation. This regulation prevents individuals who are otherwise employable, from being able to receive group or individual supported employment due to their personal care needs. Olmstead requires support for integrated employment regardless of the level of disability, so this prohibition should be eliminated (p. 3 of the VAA letter).
• Assessment. The recommendations of medical and behavioral health care professionals should be considered in the SIS process. These providers may be the professionals most familiar with the level of support needed to maintain a client's health and behavior based on direct, daily involvement with the client and supports. We also that ask DBHDS establish an appeals process for SIS scores. In addition, the regulations should emphasize that the SIS assesses the client’s needs in the absence of existing supports (page 2 of the VAA letter).
• Medical Spend-Down. Clients with earned and unearned income that exceeds Medicaid eligibility thresholds should be allowed to spend down against their medical and care expenses in order to retain eligibility for the DD waiver, as they are under the CCC Plus waiver. In addition, waiver eligibility should be protected in cases where mandatory payments from parents’ retirement accounts, including SSDI, military, and civil service, cause waiver recipients to exceed the income thresholds (page 3 of the VAA letter).

Thank you for the opportunity to comment on these regulations.

Sincerely,

Carol Skelly

Chair, Arlington Community Services Board Committee on Develpmental Disabilities