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

May 7, 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 in January, the total number of people served in waiver programs increased slightly. This includes 29 individuals who began receiving Section 21 services as part of the 167 new offers that were made over the past several months with funding provided in the biennial budget. After receiving an offer, people normally have up to six months to start services. This time allows people to evaluate the options available from providers in their areas. During the COVID-19 emergency, the Department will not automatically withdraw offers after six months, given that relatively few agencies are accepting new people at this time. The number of people receiving Section 29 services decreased by 21 people in the quarter, reflecting individuals moving from Section 29 to Section 21. The Department has made 81 new offers for Section 29 services in the quarter as openings have occurred. In normal times, we would expect to see these offers lead to an increase in Section 29 participant numbers for next quarter, but given the COVID-19 emergency, few individuals moving into or out of provider services, and we expect this pause in admissions to continue as individuals and agencies adapt to the challenging new environment. Fewer agencies are accepting new participants and many individuals are reluctant to move during the public health emergency, so it's likely to take longer than usual for new services to begin.

The supplemental budget that passed prior to the Legislature's adjournment in March included funding for 362 individuals to be added to Section 29. The funding begins on July 1, 2020. The additional funding, combined with openings that occurred when people moved from Section 29 to Section 21, is sufficient to clear the Section 29 wait list as it exists today, although we expect new applications to continue. The Department plans to begin offering the new Section 29 opportunities as soon as the funding becomes available, but given the factors noted above, it's likely to take longer than usual for services to begin.

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

Table 1. Developmental Disabilities and Brain Injury Program Participants and Wait Lists, as of April 1, 2020
Waiver Program Participants Waitlist With Other Coverage
(see Table 2)
Without Other Coverage
(Percent of Current Participants)
Brain Injury (Section 18) 204 76 36 40 (20%)
Other related Conditions (Section 20) 40 23 9 14 (35%)
Comprehensive Services for IDD/ASD (Section 21) 3,208 1,694 1,324 370 (12%)
Support Services for IDD/ASD (Section 29) 2,186 369 186 183 (8%)
Total Unduplicated Members 5,638 2,017 1,474 543 (10%)

The number of individuals on waiting lists for Sections 18, 20, 21, and 29 but who have other coverage has risen in the most recent quarter to 1,474 out of 2,017, or 73% (Table 2). This includes, for example, 199 individuals receiving children's services and 1,137 receiving services under Section 29 while they await services under Section 21, representing 67% of the Section 21 waitlist.

Table 2. Other Coverage of Wait List Members for Sections 18, 20, 21, and 29,as of April 1, 2020
Other Coverage (by Section) Unduplicated Members Requesting Waiver Services
Adult Family Care Home (Section 2) 1
Brain Injury (Section 18) 1
Elderly and Adults with Disabilities (Section 19) 27
Other Related Conditions (Section 20) 3
Comprehensive Services for IDD/ASD (Section 21) 8
Adult Day Health (Section 26) 8
Children's Services (Section 28) 199
Support Services for IDD/ASD (Section 29) 1,137
Home Health Services (Section 40) 6
Intermediate Care Facility for IDD (Section 50) 6
Nursing Facility (Section 67) 20
Family Provider Service Option (Section 96) 45
Private Non Medical Institution (Section 97) 53
Brain Injury Services (Section 102) 19
Total Unduplicated Members 1,474

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 submitting a waiver amendment to the federal government requesting flexibility to continue providing critical services, which would help providers to retain and support their direct care staff. DHHS has additionally requested through the amendment to:

  • Allow relatives or spouses to provide services and receive payment, when hired or contracted by a provider agency
  • Reimburse providers for taking steps to safely isolate COVID-19 positive residents, either in their existing homes or in separate facilities, in accordance with U.S. CDC guidelines
  • Allow shared living settings to expand to up to three individuals
  • Encourage the use of telehealth to fill service gaps when people cannot be served face-to-face
  • With DHHS approval, allow members to exceed some service limits, including hours of service provided and charges relating to assistive technology, to promote use of telehealth
  • Allow services to be provided in alternative settings (e.g. hotels, shelters, schools, churches, etc.) when necessary to respond to the COVID-19 crisis.

The Appendix K waiver amendment follows the Mills Administration's earlier actions to accelerate pay increases for personal care workers, expand access to meals for older Mainers who are home-bound because of COVID-19, and help intermediate care facilities address extra costs associated with COVID-19.

DHHS is also conducting outreach to group living facilities about infection control policies, completing this week communication to 107 assisted living facilities and adult family care homes, which will be followed by communication to residential care homes for older persons and agencies that provide homes for adults with intellectual disability. As with similar outreach to nursing facilities, this work will inform DHHS about the needs of organizations operating group living settings.

DHHS continues to regularly communicate with stakeholder groups about their needs, both in the face of the pandemic and looking ahead to the longer term.