The Arc of Northern Virginia has a focus on ensuring all people with disabilities are living a full life in their homes and communities. Our organization serves 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. We also have a team of DD Waiver Support Coordinators who work with 130+ families actively using Waiver services.
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 improvements to regulations in recent years have been a welcome step in the right direction, but we continue to see some notable hurdles to allowing people with DD to truly access what they need to be included in their community. Some of those barriers can be addressed by adjusting which services are allowed to be authorized for and/or used concurrently by Waiver users.
Area of Concern 1: Access to Environmental Modifications, Electronic Home-Based Support, and Personal Emergency Response System (PERS)
The current Compatible-Incompatible Services Grid prevents the use of Environmental Modifications (EM), Electronic Home-Based Support (EHBS), and Personal Emergency Response System (PERS) in a wide range of residential options including Group Home Residential, Sponsored Residential, and Supported Living. This is concerning as EM, EHBS, and PERS are all low-cost ways to foster independence and safety without the use of staff, but disallowing them forces individuals with either (A) choose a more restrictive setting with more staff than they would need with remote supports or (B) bring more staff into their chosen support model. Both of those alternatives are expensive and, given the widely documented shortage of Direct Support Professionals, significant hurdles to ensuring people can receive needed care.
Reimbursement rates for Group Homes, Supported Living, and Sponsored Residential take into account the cost of services and care, but do not fund start up costs to purchase or renovate a home. When providers cannot access Environmental Modifications as a funding option, they’re forced to either fundraise to make homes physically accessible for incoming residents or current residents with changing needs, or to refuse to offer services to someone who would otherwise be a suitable fit for their programs.
For individuals living in Supported Living or Sponsored Residential, there may not necessarily be 24/7 staffing needs (either awake or asleep). Remote assistance, like medication minders, the option to push a PERS button for emergency assistance, and remote monitoring are simple solutions that foster independence and decrease staff costs.
Area of Concern 2: Personal Care Under the Building Independence Waiver
The Building Independence (BI) Waiver does not allow for Personal Care Attendants. Additionally, many “Tier 1” individuals receive the BI Waiver and are then only eligible for up to 21 weekly hours of Independent Living Supports. These limits can prevent individuals who would otherwise thrive with this Waiver from accepting it. The use of limited Personal Care hours (i.e., 10 per week) would make this Waiver a realistic option and increase independent living. It would also encourage more people to utilize the BI Waiver instead of holding out for a more expensive Family and Individual Supports (FIS) Waiver in order to get some amount of personal care.
Area of Concern 3: Skilled Nursing and Private Duty Nursing Concurrent Usage
None of the Waivers allow an individual to be authorized for both Skilled Nursing and Private Duty Nursing, despite the varied and complex nursing needs of the individuals served in the Waiver system. The reality of nursing services is that people with complex and unique care needs may need unusual amounts of nursing and oversight. Notably, we worked closely for years with a family of a minor child with challenging medical care needs. In the course of for years, they were able to maintain full staffing for nursing care for a total of three weeks. The competition for nurses, especially at Waiver rates, is steep. The nurses that were successful were early in their career and willing to offer some Private Duty Nursing, but did not have adequate support and training from a Nursing Case Manager that could have been funded under Skilled Nursing. They were told that high-level of support was “already included in the rates” for Private Duty Nursing. Ultimately, the family was exhausted and admitted their son to a nursing home for children where he died within 18 months. It was a shocking and heartbreaking example of how some simple flexibility on service authorization can make the difference in whether or not community-based supports can serve someone at all.
Closing:
As Virginia looks to transform itself to a more modern DD system that is in compliance with the DOJ Settlement Agreement, we urge the consideration of flexibility on the three areas of concern highlighted above. The proposed ideas would seemingly be low cost and, likely, prevent the use of more expensive and restrictive services. They are simple ways to show Virginia’s commitment to a system focused on community inclusion for all.