In August 2018, CRAAG brought together families and providers to identify major issues in the Developmental Disabilities (DD) system. The September 2018 newsletter published "CRAAG Identifies Five Major Areas of Important and Urgent Concerns for Adults with Autism and Developmental Disabilities."
This family story and assessment expands upon what we learned and what CRAAG believes needs to change.
This true story from a local family describes their struggle to secure a safe living environment for their son before they themselves can no longer directly advocate, care, and support him. This story, and many others, underscores the need for CRAAG’s advocacy efforts.
A father told CRAAG this story about his 24 year old son with autism:
In 2016, during implementation of the redesigned Developmental Disabilities (DD) waivers, the son transitioned from the prior DD waiver to the new Family and Individual Supports (FIS) waiver. Similarly, others receiving the old Intellectual Disability (ID) waiver transitioned automatically to the new Community Living waiver (CL).
This transition was done without an assessment of current needs. The FIS waiver does not pay for all the young man’s behavioral supports, nor does it pay for 24/7 professional supervision. Round-the-clock supervision is part of the CL waiver benefits, not the FIS's benefits. Turning down the FIS waiver was not an option because doing so would have left the family without funding for the adult day program.
The aging parents believe they are one incident away from a critical emergency involving their son’s or their own safety. The son’s professional support staff agree he needs round-the-clock, professional, on-site supervision near to his day program.
With the assistance of his Case Manager, the young man was added to the waitlist for a “reserve slot.” In anticipation of receiving a CL waiver with one of the 25 newly allotted “reserve slots,” and, with the encouragement of the Case Manager, they began a statewide search for suitable housing options. After months of searching, they finally found an appropriate nearby residence with an upcoming vacancy.
Then the family was blindsided by a Department of Behavioral Health and Disability Services (DBHDS) decision to retain 15 of the new “reserve slots” for emergencies, without addressing the son’s need. Given that the family’s living arrangement is dire and demand for housing far exceeds supply, they lost hope in finding another appropriate vacancy.
Through their legislator, the family learned that the son would likely get a slot in January 2019. Upon further appeal to DBHDS, they were informed that their son would immediately receive an emergency slot. They are hopeful that the vacancy will be held for them.
Although this family is optimistic that the profound needs of their son will now be met, many others with a similar story and needs remain under-served. This issue must be addressed, especially for individuals with significant adverse behaviors.
Virginia's Developmental Disabilities (DD) Waiver System
On August 23, 2012, when the Commonwealth signed a Settlement Agreement with the U.S. Department of Justice (DOJ Settlement Agreement), Virginia agreed to offer individuals with developmental disabilities more choice, control, and flexibility in accessing services to live in the least restrictive community setting consistent with their needs.
To achieve compliance with the DOJ Settlement provisions, the Commonwealth redesigned its Home and Community-Based Services (HCBS) Medicaid Waiver program and implemented the new waivers in September 2016. In twelve reports since 2012, the court-appointed Independent Reviewer has monitored, investigated, and verified Virginia’s progress. To date, Virginia remains out of compliance in 54 of 122 specific areas, including waiver availability, service adequacy and appropriateness, and availability of competent direct service providers.
Short of a major funding boost and expansion of the number of qualified service providers and residential alternatives, CRAAG parents doubt that Virginia will be in compliance with the DOJ Settlement by the end of Fiscal Year (FY) 2021 as mandated.
Despite the good intentions and efforts of the state agencies and General Assembly (GA), Virginia’s developmental disabilities system remains underfunded. In addition, change is moving too slowly, hard decisions get studied instead of addressed, and in some cases, change is going in the wrong direction.
The following four categories of findings are of urgent concern to CRAAG families.
- Waiver redesign and implementation
- Restrictive and inflexible funding mechanisms
- Direct service staff and service provider shortages
- Growing DD waitlist
1. Waiver redesign and implementation
- Initial assignments for individuals moving from the old to the new waivers did not recognize “criticality of need.” Only 43% of those with a CL waiver use the 24/7 on-site supervision option, while many with the FIS waiver need that service;
- The “Reserve slot” process, established to transition individuals between waivers, is flawed, underfunded, and lacks urgency;
- Few providers are providing independent living supports for Building Independence (BI) waiver;
- The system is designed to ensure that individuals stay in their families’ care as long as possible. This approach defers the current costs of service delivery and builds risk and hopelessness into the system. “The quickest path to a waiver, is my death” is a common caregiver refrain.”
- Restrictive interpretation of Centers for Medicare and Medicaid Services (CMS) Final Rule limits consumer choices;
- Service providers report concerns about low reimbursement rate structures, burdensome and duplicative regulations and requirements, and a lack of clarity around the finalization of DMAS policies and regulations; and
- Families and providers report that the Supports Intensity Scale (SIS) tool can yield inaccurate results.
: According to the 12
Report of the Independent Reviewer, approximately 120 persons need to transition from the FIS to the CL waiver annually. Funding 25 reserve slots per year does not address the initial assignment errors. Officials need to admit the shortcomings and find a way to move individuals into the CL waiver when it matches their needs rather than waiting until a crisis reveals that families can no longer cope.
2. Restrictive and inflexible funding mechanisms
- The developmental disabilities system is underfunded;
- Funding the “package of benefits” for each type of waiver is more costly, restrictive, and inflexible; and,
- Funding a “menu of services” would provide individuals with choice, control, and flexibility. It is likely less costly, as well.
: The “menu of services” is a core idea that warrants discussion and could make the waiver program more flexible and effective. CRAAG calls on DBHDS and the GA to consider this approach and to verify whether it yields a neutral funding result (with only assessed support needs provided). The state needs to be more transparent regarding budgeting for developmental disability services. It should provide clarity regarding budget determination, distribution of unspent funds and utilization of funds across and between disability related programs, including Medicaid, Medicaid Waiver, the Children’s Services Act for At-Risk Youth and Families (CSA), and other programs or funding sources.
3. Direct service staff and service provider shortages
- Direct service staff shortages are at a critical level because reimbursement rates set by the state are too low to attract qualified staff;
- Since implementation, high turnover rates for case management and direct service staff have been reported;
- There are severe shortages of Board Certified Behavior Analysts (BCBAs) and other behavior consultants who train, supervise and support direct service staff; and,
- There is a lack of residential and other waiver options because service providers are wary to start or expand services until DMAS policies are finalized and reimbursement rates are boosted.
The Commonwealth is currently studying the issue of low rates and will decide by Fall 2019 whether to propose pay rate increases for FY2020. The issue of high turnover needs to be studied as well. DBHDS needs a plan to strategically reverse service provider shortages and increase capacity to serve the existing waiver population, AND to respond to increased demands as mandated waiver slots are awarded under the DOJ Settlement terms. Providers must be incentivized to expand services consistent with the release of new slots.
4. Growing DD Waitlist
- The waitlist is growing faster that the assignment of new waiver slots. Nearly half of qualified individuals are on the waitlist instead of being served.
- Nearly 13,000 individuals are on the DD waitlist, portending a looming crisis as caregivers age and natural supports disappear;
- The 1,695 new waiver slots authorized over the next two fiscal years will only address about 54% of the Priority 1 cases; and,
- The $1,000 Individual and Family Support Program (IFSP) funding for those on the waitlist is inadequate when weighed against all the nonreimbursed expenses born by the families.
Access to crisis services, case management, and housing vouchers is a positive. However, the limited number of safe, affordable housing units participating in the voucher program is insufficient to meet the needs of families. The IFSP grant was dropped from $3,000 to $1,000 as the waitlist grew. That program needs more funding. Budgeting for new slots should sync with the waitlist priority system.
November 27, 2018