Quarterly Update: Supporting Adults with Developmental Disabilities and Brain Injury in their Homes and Communities

August 21, 2020

The Maine Department of Health and Human Services (DHHS) provides home and community-based services to adults with intellectual or developmental disabilities (IDD, ORC), Autism Spectrum Disorder (ASD), and brain injury primarily through MaineCare-funded programs. These are often called waiver programs because they operate with special exceptions from the federal government and are referred to by their Section number, which is where they can be found in the MaineCare rules.

Since our last update, the total number of people served in waiver programs increased by 55. This includes 18 individuals who began receiving Section 21 services and 38 individuals who began receiving Section 29 services. The number of participants receiving Section 20 fell by one, and the number of participants receiving Section 18 services was unchanged. The increase in the number of people receiving Section 21 and 29 services indicates that members were still able to enroll in services despite the challenges of the pandemic. Section 29 offers made in the second quarter were related to openings created as some individuals moved from Section 29 to Section 21. Enactment in March of Governor Mills’ supplemental budget created 362 additional opportunities for services in State Fiscal Year 2021, which began on July 1. The Department will make 50 new Section 29 offers each month until all of the funded offers have been made.

Table 1 provides a snapshot of the programs as of July 1, 2020.

Table 1. Developmental Disabilities and Brain Injury Program Participants and Wait Lists, as of July 1, 2020
Waiver Program Participants Waitlist With Other Coverage
(see Table 2)
Without Other Coverage
(Percent of Current Participants)
Brain Injury (Section 18) 204 80 30 50 (25%)
Other related Conditions (Section 20) 39 22 8 14 (36%)
Comprehensive Services for IDD/ASD (Section 21) 3,226 1,790 1,242 548 (17%)
Support Services for IDD/ASD (Section 29) 2.224 391 157 234 (11%)
Total Unduplicated Members 5,693 2,105 1,437 668 (12%)

The number of individuals on waiting lists for Sections 18, 20, 21, and 29 but who have other coverage is 1,437 out of 2,105, or 68% (Table 2). This includes, for example, 238 individuals receiving children's services and 1,063 receiving services under Section 29 while they await services under Section 21.

Table 2. Other Coverage of Wait List Members for Sections 18, 20, 21, and 29, as of July 1, 2020
Other Coverage (by Section) Unduplicated Members Requesting Waiver Services
Adult Family Care Home (Section 2) 1
Elderly and Adults with Disabilities (Section 19) 27
Other Related Conditions (Section 20) 3
Comprehensive Services for IDD/ASD (Section 21) 13
Adult Day Health (Section 26) 11
Children's Support Services (Section 28) 238
Support Services for IDD/ASD (Section 29) 1,063
Intermediate Care Facility for IDD (Section 50) 7
Nursing Facility (Section 67) 17
Family Provider Service Option (Section 96) 30
Private Non-Medical Institution (Section 97) 64
Brain Injury Services (Section 102) 7
Total Unduplicated Members 1,437

The Department has taken numerous steps to support adults with developmental disabilities and brain injury in their homes and communities in the face of the COVID-19 pandemic. This includes implementing Appendix K to all of Maine’s home and community-based waiver programs. Under Appendix K, providers received a temporary rate increase to help offset the costs of hazard pay for direct support workers, personal protective equipment and other COVID-19 related costs. Provisions also were added to allow payment of family members to provide care and to increase payment for additional members in shared living. An emergency quarantine service was added for COVID-19 positive members. Limits were temporarily increased for several key services, such as assistive technology, data transmission charges to support use of the technology, and case management hours, and agencies were given flexibility with staffing to ensure they can follow best practices for preventing the spread of infection across homes. The temporary increases to service limits and staffing flexibility were scheduled to end on May 31, 2020, but given the ongoing need, the Department has extended those provisions to October 31, 2020.

Weekly stakeholder calls were held during the quarter to address needs during the emergency. The Department has worked very closely with providers to monitor the impact of COVID-19, provide assistance on infection control, coordinate urgent deliveries of personal protective equipment (PPE), schedule the National Guard for several N-95 mask fit-testing missions at agencies, and provide information about federal relief opportunities.