Issues

Service Reforms for Children with Intellectual and Developmental Disabilities

Maine families with children who are diagnosed with intellectual and developmental disabilities are currently not able to access the community services that they need. There are long waitlists for basic support services which has led to children being inappropriately hospitalized, institutionalized, incarcerated, homeless, and sent out of the state. Repeated cuts to reimbursement rates for community-based services have further led to a shortage of providers and additional waitlists even after funding for services is authorized.

Children’s Behavioral Health Services

There are multiple waitlists overseen by OCFS listing hundreds of children with developmental and mental health disabilities who are waiting for Section 28 and 65 services. These waitlists exist due to a shortage of providers and represent children who are unable to access any of the support services they have been determined eligible for. The waitlists must be eliminated in conjunction with the creation of waiver services for children with IDD.

a. Children with Intellectual and Developmental Disabilities

There are no community-based services designed specifically to meet the needs of children with IDD. The Department of Health and Human Services (“the Department”) promulgated regulations to begin providing specialized services for children with IDD in 20111. However, the reimbursement rate was set so low that providers were unable to deliver the service. The Department withdrew the regulations and discontinued the service in 2015 without serving a single child.

Recommendation: Establish a home and community-based waiver for children with IDD with a rate which supports the services children are determined eligible for.

b. Psychiatric Residential Treatment Facilities

The Department promulgated regulations this year to establish new institutions, Psychiatric Residential Treatment Facilities, for children with disabilities. These institutions were created with the stated intent of providing services to children incarcerated, stranded in psychiatric hospitalizations and emergency rooms. However, because community support services are unavailable, it’s unclear whether an institution is the least restrictive environment for these children.

Recommendation: Establish a home and community-based waiver for children with IDD and fund the remaining waitlists prior to approving new institutional services.

Non-Emergency Transportation

The current brokerage system for providing Non-Emergency Transportation fails to provide consistent and appropriate transportation and has had a significant and disparate impact on children with disabilities. Vehicles are not adapted or fitted with car seats and other equipment necessary to transport children with disabilities. Further, children are being transported with adult recipients and left unattended in dangerous situations where they are at risk for abuse, neglect, and exploitation.

Recommendation: Require specific training and background checks for Non-Emergency Transportation drivers transporting children with disabilities and allow direct billing for current Section 28 and 65 to provide Non-Emergency Transportation to Section 28 and 65 services.

Service Reforms for Adults with Intellectual and Developmental Disabilities

Due to a lack of enhanced behavioral supports, adults diagnosed with intellectual and developmental disabilities (“IDD”) are inappropriately hospitalized, institutionalized, incarcerated, homeless, and sent out of state. The lengthy waitlist for Section 21 services is prioritized by need for Adult Protective Services, leaving adults with IDD without the support they need until abuse, neglect, or exploitation has occurred. The Department of Health and Human Services (“the Department”) has lost capacity to provide adequate crisis services to intervene creating an overreliance on hospitals and institutions to serve as crisis support.

Crisis Services

Crisis Services, specifically identified in Maine statute to prevent inappropriate placement in hospitals or jails2, currently lacks the capacity to intervene to support adults with IDD in crisis. There are currently four (4) crisis homes intended to cover the entire State which are consistently unavailable. Crisis workers are used to staff those homes and therefore unable to meet with or respond to individuals who call the crisis hotline. Though there are eight (8) placements across the four (4) homes, there are constructively less as some homes can only accommodate staffing for one (1) member at a time.

Recommendation: Promulgate regulations to govern Crisis Services which establish and support capacity benchmarks, data collection, and training.

Adults with Behavioral Needs

Section 21 and 29 services do not include specialized and individualized support for individuals with high behavioral needs. This includes environmental adaptions, consistent and specified staff training, and clinical support and oversight. These services and support have been cut and/or so greatly reduced that individuals with behavioral needs are unable to find support in the community.

Recommendation: Expand Section 21 and 29 services to include enhanced services and associated funding for individuals with high behavioral needs.

Office of Inspector General Report

In August of 2017, the Office of Inspector General (“OIG”) issued a report with findings that the Department did not investigate thousands of reports of abuse, neglect, exploitation, and deaths of Mainers with IDD. In January of 2018, the OIG jointly with the Administration for Community Living (“ACL”) and the Office for Civil Rights (“OCR”) issued recommendations and model practices for ensuring health and safety for beneficiaries of Developmental Services. The Department has not promulgated regulations or established rules consistent with those recommendations.

Recommendation: Integrate the OIG’s joint recommendations into our current Adult Protective Services and Reportable Event regulations, including recommended model practices for incident management and investigation, incident management audits, mortality review, and quality assurance.

Non-Emergency Transportation

The current brokerage system for providing Non-Emergency Transportation fails to provide consistent and appropriate transportation and has had a significant disparate impact on adults with IDD. Adults with IDD are routinely denied transportation to medically necessary services without notice because brokers are unwilling to provide necessary and reasonable accommodations. This further puts adults with IDD in dangerous situations where they are at risk for abuse, neglect, and exploitation.

Recommendation: Require training and background checks for Non-Emergency Transportation drivers transporting adults with IDD and allow direct billing for current Section 21 and 29 providers to provide Non-Emergency Transportation to Section 21 and 29 services.

1Previously, 10-144 Chapter 101, MaineCare Benefits Manual, Chapter II and III, Section 32, Waiver Services for Children with Intellectual Disabilities or Pervasive Developmental Disorders

234-B M.R.S. §5206 et seq