Services Provided to Individuals with Intellectual Disabilities and Autism in their Homes and Communities

May 30, 2019

The Department of Health and Human Services (DHHS) offers home- and community-based services to adults with intellectual disabilities and autism through two MaineCare-funded programs. These are often called waiver programs because they operate with special waivers from the federal government. In Maine, we refer to them as Section 21 and Section 29, which is where they can be found in the MaineCare rules.

Many community services are available under both Section 21 and Section 29. These include:

  • Home Support, provided in a person's home to assist with eating, bathing, dressing, cooking, laundry, grocery shopping, medication administration, etc.;
  • Remote Home Support, provided through assistive technology such as sensors, cameras, and speakers to monitor or interact with a person;
  • Shared Living, in which a person lives with a care provider in a private home and receives support in needed areas of home life and community inclusion;
  • Community Support, a service to increase a person's ability to engage in community life and social relationships;
  • Employment Support, and other services to prepare for and be supported in employment; and
  • Assistive Technology, which includes assessment of a person's need for technology; purchase, lease or repair of items, and support for internet or cable costs needed to operate the items.

Additional services are available only under Section 21, including:

  • Home Support- Agency Per Diem, a group-home setting where agency staff provide services 24 hours per day, including assistance with eating, bathing, dressing, cooking, laundry, grocery shopping, medication administration, and community inclusion;
  • Specialized Medical Equipment and Supplies, which are devices or equipment not covered as a regular MaineCare service, such as van lifts, ramps, and reclining wheelchairs; and
  • Communication Aids, which are devices or services to assist with communication.

As of May 14, 3,173 people were receiving services through Section 21 and 2,281 people through Section 29. An additional 55 people had offers for Section 21 and 66 had offers for Section 29. This means the funds are available to serve those additional people, and they are currently arranging services.

Under Section 21, individuals are prioritized for services based on their level of need. Under Section 29, individuals receive offers on a first-come, first-served basis.

The number of people needing these services exceeds funding. Section 21 has had a waiting list for many years; on May 14, it numbered 1,580. None of those on the list 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, which include people at risk of abuse without the requested services and those not at risk for abuse, respectively. Some individuals on the Section 21 waiting list are currently receiving services under Section 29.

DHHS is now establishing a waiting list for Section 29 because that program has reached the maximum number of people who can be served with existing funding. The waiting list for Section 29 as of May 14 is 162 people. Unfortunately, it is not possible to predict how long a person must wait, because new offers are contingent on existing waiver members leaving a program or new funding being allocated.

The Governor's biennial budget proposal before the Legislature includes funding to serve an additional 167 people in Section 21. If approved by the Legislature, the new funding will become available in the fiscal year that begins July 1, 2019.

The budget also includes a request to establish a dedicated crisis intake line for adults with intellectual or developmental disabilities, autism and/or brain injury. This would 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.

These proposals are just the start of our work to improve the quality and accessibility of services offered to these Maine residents.