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

October 8, 2019

The Department of Health and Human Services (DHHS) provides home- and community-based services to adults with intellectual or developmental disabilities (IDD), 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.

Funding for these services was expanded in Governor Mills' biennial budget that took effect July 1, allowing DHHS to serve an additional 167 people in the current fiscal year under Section 21. We've started offering Section 21 services to additional people and expect to hit this target promptly.

Since our last update in May, the number of people served in Section 21 rose from 3,173 to 3,186, while those served through Section 29 grew from 2,281 to 2,286.

Table 1 provides a snapshot of the programs as of the start of this quarter of the year.

Table 1. Developmental Disabilities and Brain Injury Program Participants and Wait Lists, as of October 1, 2019

Waiver Program

Participants

Waitlist

With Other Coverage (see Table 2)

Without Other Coverage (Percent of Current Participants)

Brain Injury (Section 18)

199

42

16

26 (13%)

Other related Conditions (Section 20)

42

17

5

12 (29%)

Comprehensive Services for IDD/ASD (Section 21)

3,186

1,639

1,110

529 (17%)

Support Services for IDD/ASD (Section 29)

2,286

323

134

189 (8%)

Total Unduplicated Members

5,713

1,918

1,219

699 (12%)

Most of the individuals on waiting lists for Sections 18, 20, 21, and 29 (1,219 out of 1,918, or 64%), currently have coverage under a different Section of MaineCare. This includes, for example, 978 people who are receiving services under Section 29 while they await services under Section 21 (Table 2), representing 60% of the Section 21 waitlist. As more new offers are made for Section 21 services, additional capacity will be opened in Section 29 as people move from one waiver program to the other.

Table 2. Other Coverage of Wait List Members for Sections 18, 20, 21, and 29, as of October 1, 2019

Other Coverage (by Section)

Unduplicated Members Requesting Waiver Services

Adult Family Care Home (Section 2)

1

Elderly and Adults with Disabilities (Section 19)

18

Other Related Conditions (Section 20)

3

Comprehensive Services for IDD/ASD (Section 21)

3

Adult Day Health (Section 26)

2

Children's Services (Section 28)

132

Support Services for IDD/ASD (section 29)

978

Intermediate Care Facility for IDD (Section 50)

7

Nursing Facility (Section 67)

14

Family Provider Service Option (Section 96)

29

Private NonMedical Institution (Section 97)

61

Brain Injury Services (Section 102)

11

Total Unduplicated Members

1,219

The waitlists also include individuals who may not need waiver services currently but have added their names to the waitlists in anticipation of needing services in the future. This includes those who are added to the Section 21 waitlist when they turn 18 years of age, but who plan to continue receiving services under the Children's Services Section until they become 21 years old. The following charts show that most people on waiting lists are young adults.

Section 21 Waitlist by Age

Section 29 Waitlist by Age

None of those on the Section 21 waitlist are categorized as Priority 1, which includes people determined to be in immediate need of Adult Protective Services due to abuse or neglect. Those waiting are in the Priority 2 and 3 groups. The Department continues to serve all Priority 1 applicants by using openings that become available when people leave the waiver program (attrition).

With funding provided through Governor Mills' biennial budget, we are also establishing a crisis intake function for adults with intellectual or developmental disabilities, autism and/or brain injury. This will help to prevent and de-escalate crises by using specially trained crisis workers, providing better assessment of clinical needs earlier, improving program data, and taking pressure off overextended field workers.

Maine DHHS recognizes that there has long been a need to improve services for individuals with developmental disabilities and brain injury. While capacity to serve eligible people in Maine has grown, so too has demand - at a greater pace. And as important as the current waiver services are, they represent a limited set of choices for individuals and their families. Many have asked for services to be more flexible and more responsive to individual needs and phases of life.

The Department is receiving invaluable feedback from stakeholders on the Home and Community Based Services Advisory Committee, which is helping ensure Maine's compliance with federal rules that require all service settings to be as integrated in the community as possible. The Department also participated in listening sessions with the Maine Developmental Services Oversight & Advisory Board (MDSOAB) this summer, where many individuals and family members expressed the need for better information and family networking opportunities, a broader array of flexible service options, better person-centered planning that addresses the entire lifespan, more training for people at all levels of the system, and better support for people with challenging behaviors.

This and other feedback collected through multiple venues are informing the Department's plans for developmental services, autism and brain injury, which will be submitted to the Legislature in February. We look forward to finding ways to improve the quality and accessibility of these services.