In November 2011 the National Disability Rights Network (NDRN) released “Keeping the Promise: True Community Integration and the Need for Monitoring and Advocacy,” a report summarizing two community monitoring and advocacy projects that focused on individuals with intellectual and developmental disabilities who were transitioning from large institutions to community-based care settings in Alabama and North Carolina.
The NDRN report examines the efforts and findings reported by the Alabama Disabilities Advocacy Program (ADAP) and Disability Rights North Carolina (DRNC), two of AIDD’s protection and advocacy systems (P&As). ADAP and DRNC received funding under training and technical assistance contracts with NDRN to conduct the community monitoring and advocacy projects.
In the report, NDRN notes that “institutions can be closed and individuals with disabilities moved into community settings, but their quality of life can be no more independent and integrated than their lives in institutions unless community integration efforts include P&A monitoring and advocacy.”
ADAP reported on monitoring and advocacy conducted for individuals with a range of developmental disabilities who were transitioning from Alabama’s last public institution, W.D. Partlow Developmental Center, to more appropriate, less restrictive homes in the community. ADAP monitored at least 41 community settings where six or fewer individuals with developmental disabilities live, including people transitioning from Partlow. (The Alabama Department of Mental Health closed Partlow in December 2011, making Alabama the first southeastern state to close all of its state-run institutions.)
DRNC reported on a 7-month project in which two advocates visited 31 community settings where six or fewer people with developmental disabilities lived. The P&A interviewed 82 individuals with developmental disabilities, seven of whom were transitioning from an institution, and 56 individuals employed by the facilities.
Both P&As submitted reports detailing their findings to NDRN after concluding the project.
The P&As found that overall, the individuals who transitioned to community settings enjoyed their increased freedom and independence and were happy with their new homes. Positive outcomes reported by ADAP and DRNC include development of self-advocacy skills, increased self-determination, and improvement in an individual’s behavior and medical condition.
At the same time, P&A staff observed many challenges. DRNC reported that day programs were often not very meaningful, the delivery of services to people with intellectual or developmental disabilities was inconsistent, safety concerns were not addressed immediately, and two of the community settings were closed during the project period for financial reasons. In Alabama, the situation was very similar, with ADAP providing advocacy support for assistive technology, opportunities for employment, safety, medical care, and diet.
A number of significant problems were identified by the P&As, including medical issues, environmental safety hazards, and discrimination.
ADAP reported that one of its biggest obstacles was ensuring the safety of individuals with medically complex needs. After four deaths occurred when individuals were transitioning to community nursing homes or hospitals, ADAP intervened and urged the Department of Mental Health Services (DMH) to stop the transitions while improvements were made. As requested, DMH immediately ceased the transitions and began working to improve its strategies, communication, and planning by forming a workgroup, retaining a consultant, and obtaining technical assistance from the National Association of State Directors of Developmental Disabilities Services. Following these efforts, DMH resumed transitions successfully.
Continuity of care is another significant issue for individuals transitioning into the community. ADAP found that one individual’s medications had been changed by his community physician after he moved into the community, even though his records at Partlow noted that his medication should not be changed. As a result of this change, the individual required emergency hospitalization at a psychiatric unit at a local hospital. To address this challenge, ADAP began working to ensure that continuity of care is maintained when individuals are discharged from Partlow.
Both P&As found safety issues while visiting the community homes and were able to quickly eliminate the concerns that they found. One issue related to a hazardous front door—the storm door was missing glass and a hornet’s nest was located above the threshold. The advocate ensured that the door was quickly fixed and the nest removed. Advocates also found cleaning supplies in an unlocked closet, as well as unsafe and unsanitary equipment. P&A staff quickly resolved these issues by working with the home manager or the resident’s case manager.
ADAP reported that individuals with intellectual and developmental disabilities who were transitioning into the community faced discrimination. A “Not in My Backyard” syndrome led one municipality to seek to prohibit the establishment of any new group home within one mile of any pre-existing group home. ADAP has filed a federal administrative complaint, and advocacy groups are planning protests.
Additional information on the P&As’ findings and NDRN’s recommendations can be found by accessing the full report on NDRN’s website.