The Arc of Virginia and The Arc of Northern Virginia have a focus on ensuring all people with disabilities are living a full life in their homes and communities.  Our organizations collectively serve thousands 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 individuals with DD and 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 to ensure people have real access to the newest and most inclusive Waiver services, that are currently underutilized despite the significant Waiver redesign process.  

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 and DMAS at every opportunity to assist in having needed adjustments made to the DD Waiver Regulations.

12VAC30-50-440 (Support coordination and Service facilitation)

RECOMMENDATION:  Multiple changes for an equitable system for ID and DD

• 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.

• 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.  

• The regulations allow individuals transferring from institutional to community settings to receive 90 days of paid Support Coordination if they have a developmental disability, but only 60 days of paid Support Coordination if they are in the same situation but have an intellectual disability diagnosis.  These timelines should be identical and should reflect the average time it takes individuals to plan and complete a discharge from institutional settings.

12VAC30-122-30. Waiver populations; single waiver enrollment; waiver termination upon loss of eligibility.

RECOMMENDATION: Remove: “Elderly or Disabled with Consumer Direction (EDCD)”.  Replace with “Commonwealth Coordinated Care Waiver”.  Remove: “or the Technology Assisted”. 

Waiting List and Eligibility

12VAC30-122-90 Waiting List D. 1. 

RECOMMENDATION: Add age criteria for Priority 1 to include caregivers age 75 years and older and add people age 65 years and older who are on the DD Waiver Wait List.

For individuals on the waiting list, we have concerns about the age of the primary caregiver(s) and the age of people on the waiting list 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.  There are currently 14 people over age 65 in priority one of the waiting list, and an additional 64 in priority two and 23 in priority 3.  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 the age eligibility for Priority One reduces the odds that the person with a disability will be able to access services before their caregiver dies. Similarly people who are on the waiting list who are 65 years or older are usually without natural supports and caregivers and they are most likely dealing with the effects of aging.  They are in need of waiver services that address the need for community engagement, personal care, companionship and close monitoring of their physical and mental health conditions.  At age 65 people on the waiting list should be assigned an appropriate waiver and not be left to wait longer to be assigned a waiver. 

The current priority level system  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 and the age of the person on the waiting list be considered as a factor in determining eligibility for Priority One of the waiting list.  Without needed waiver services people are at high risk for nursing facilities or institutional placement. 

12VAC30-122-90 D.1 Waiting List; criteria; slot assignment; emergency access; reserve slots.

RECOMMENDATION:  Consider recommendations from the DD Waivers Wait List and Rates Workgroup.

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.  Consider recommendations that come from 2021 DD Waivers Wait List and Rates Workgroup.

12VAC30-122-90 G.2 Eligibility criteria for emergency access to either the FIS, CL or
BI waiver.

RECOMMENDATION: Implement a process for waiver transfers that prioritizes the urgency of need. 

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.

12VAC30-122-60 Waiver and Service Eligibility

RECOMMENDATION: Take action to allow a spend down for people on the DD Waivers. 

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.  This issue was discussed in 2020 in a statewide workgroup related to SB 213, and that group recommended allowing a spend down for the DD Waivers again.

12VAC30-122-100 B  Modifications to or termination of services

RECOMMENDATION:  Add “guardian as appropriate” to persons involved.  There are other places in the regulations who include “family/caregiver” but do not include guardian. 

Service Definitions

12VAC30-122-270 (Assistive technology service)

12 VAC30-122-370 (Environmental modifications service)

ACKNOWLEDGEMENT of upcoming Assistive Technology and Environmental Modification Workgroup

RECOMMENDATION:  Establish a workgroup composed of relevant stakeholders including individuals with DD and families to work with DMAS and DBHDS to make recommendations for amendments to the regulations.

The allowable usages of Assistive Technology and Environmental Modifications are quite narrow, not  allowing a range of changes needed for safety, independence, and community access.  The 2021 General Assembly Session formed a workgroup to look at virtual supports and related technologies and we suggest their input be considered to guide further amendments to the regulations.

12VAC30-122-540 Supported living residential service

RECOMMENDATION: Allow housing vouchers to be used for Supported Living residential service.

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.  

12VAC30-122-210 A.4  Payment for covered services

RECOMMENDATION: Add all employment and nursing services to services eligible for customized rates.

The current regulations only allow customized rates in community coaching, 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.  We have worked with families whose loved ones were unable to access congregate residential services, or did not want to, thus could not get adequately funded nursing in their home.  In one case, this resulted in a child being admitted to a nursing home and ultimately dying from poor care.

12VAC30-122-390 (Group home residential service)

RECOMMENDATION:  Match group home capacity to the 4 and under size of DOJ recommendation.

With a change being made to the Group home size, we recommend matching that size to the recommended under four made by DOJ during the Settlement Agreement.  Since all home sizes above the new number are grand-fathered in there is no reason not to adhere to the DOJ recommendation. 

12VAC30-122-450. (Peer support service)

RECOMMENDATION: Remove statement making the service last resort and requirement for living in one's own home. 

The definition for Peer Support states “Prior to accessing funding for this waiver service, all other available and appropriate funding sources shall be explored and exhausted”.  This requirement is unique to this service and devalues the service itself, acting as a barrier to the service.  This statement treats the service as a “ last resort”, when in fact many people with developmental disabilities may benefit from or prefer to learn about the options and resources available to them from someone with prior knowledge through lived experience.  

Additionally, the requirement that the Peer Mentor must have lived in their own home for one year limits the benefit of this service.  There may be someone who lives with their family or in a group home who has successfully worked in the community and has valuable insights to offer another person with a disability who is seeking to find community employment.  The experience of the Peer Mentor should match the desired goal of the mentee.  

12VAC30-122-540. (Supported living residential service)

RECOMMENDATION:  Remove “setting operated by provider”.

The new service of Supported Living was hoped by many people with disabilities, families and advocates to be the alternative to provider owned group/sponsored homes, for people with high support needs to receive up to 24 hours of support but in their own home.  

Continuing to tie the setting to the provider rather than to the person does not adhere to the HCBS settings rule by allowing the person to have control over their home environment including the ability to hire and fire service providers.  If a person has to move in order to choose a different provider, then their home was never their home.  

Keeping Supported Living as “provider controlled” takes all practical options for people with high support needs to choose to live independently with supports in their own home, thus creating an unjust inequitable system that denies those with high support needs a fully included life because of their need for 24 hour support.  

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.