Supported by a grant from the Boston Foundation, The Arc of Massachusetts recently released a report detailing the health care experiences of adults with intellectual and developmental disabilities. The publication included several recommendations intended to improve both access to and quality of health care services. As a state agency, we are committed to improving the quality of health care individuals with intellectual disabilities experience. While much remains to be done, we have and continue to be involved in many activities and initiatives that have advanced the goal of improved quality and access. Please see below for highlights of some of our initiatives and on-going work. We look forward to continuing this important work and implementing new strategies to support the goal of quality health care.

I. Initiatives

1. The Health Promotion and Coordination Initiative

This initiative has been in effect since December, 2003. Its primary goal is to enhance the quality of health care that individuals with disabilities receive through a focus on the important role that direct support professionals play in health care advocacy. The initiative includes:

  • A set of preventive health screening recommendations adapted from the Massachusetts Health Quality Partnership are used by all providers of our services during the annual physical health care exam. When first published, they were mailed to over 7000 practicing physicians in Massachusetts. Our providers are required to use these guidelines when accompanying an individual to his/her annual physical exam so that they and health care practitioners are aware of the preventive health screening procedures individuals should be getting. The recommendations provide valuable guidance to both direct support professionals and health care practitioners and serve as a valuable tool in assuring that individuals with intellectual disabilities receive age specific screenings. These guidelines are updated as screening recommendations change.
  • A health review checklist which is completed by direct support professionals and taken to every primary care appointment to aid in communication and follow up. The health review checklist allows direct support professionals to respond to questions about easily observable indicators of health status. The health review checklist provides the primary health care provider with important information to allow for proper diagnosis and treatment.
  • The requirement for an electronic health care record for all individuals receiving residential supports from us. Providers utilize this health care record in a variety of settings including primary and specialty care visits as well as unanticipated visits to the emergency room. The health care record is required to be updated and submitted annually as part of the Individual Service Plan process.
  • A set of tools to use to assure a successful health care encounter including procedures for a medical appointment and an encounter form
  • A set of easy to use informational sheets posted on our website for use by direct support professionals to assist them in observing and reporting signs and symptoms of illness. New informational sheets are added periodically.
  • Statewide quarterly trainings offered to our providers in a Train-the-Trainer modality on common health related issues. Trainings already provided include those on seizures, nutrition, Medicare Part D, antibiotic resistant microorganisms, hospice service, scabies, recognizing behavioral symptoms of illness, dysphagia, sepsis, dental issues. Training materials are posted on our website.

2. "Falls Prevention" Campaign

Entitled "Screen, Train, Observe, Prevent Falls ( S.T.O.P. Falls ) ", this initiative is currently underway to decrease the number of preventable falls for people with intellectual disabilities. As part of the campaign, we provided all 200 of our providers with a training CD and curriculum designed to decrease falls in individuals with ID. Training was provided across the state for over 300 provider staff in how to use the new materials to train additional staff. A pilot that will provide technical assistance and support to several providers is underway and will track the rate of all falls in residential and day programs over the next several months.

II. Publications

In an on-going effort to distribute and share important health related information, we create a variety of informational materials in different formats including:

  1. The " Living Well" Newsletter is published on a semi-annual basis and highlights seasonal health care concerns as well as specific topics of interest that impact the health status of individuals we support. It is mailed to every residential program site and is posted on our website.
  2. Protocols of specific interest to the community, i.e. Methicillin resistant staphylococcus aureus (MRSA), Vancomycin resistant staphylococcus aureus (VRSA), Vancomycin resistant enterococci (VRE), Clostridium Difficile (C. Diff,) Dysphagia, scabies, and seizures are posted on our website.
  3. As needed "health advisories" posted on our website on issues of immediate concern, such as
  4. Updated Medication Administration Program ( MAP) policies developed in collaboration with DPH and DMH to continue to meet the needs of our community. Recent changes include a new section on MAP policies related to hospice services in order to eliminate obstacles to hospice services within the constraints of MAP; for example, an exception to how medications need to be labeled to better address the frequent order changes inherent within hospice services, how to store and count the emergency medication kit provided by hospice, allowing staff to use orders that contain dose ranges after conferring with the hospice nurse, requiring orientations to MAP for hospice providers and an orientation to hospice services for our provider staff when the services are instituted.
  5. The annual mortality report to help identify trends and patterns in causes of death that may be prevented if identified earlier and treated appropriately.

III. Interagency Collaborations

We have engaged in several collaborative training and service efforts to increase the knowledge of health care practitioners and to improve access to specialty services including the following:

  • Successful joint statewide conference with the Alzheimer's Association for families and practitioners designed to better support caregivers and individuals. Also created screening tools for direct care staff and clinicians as well as a resource list of practitioners with expertise in diagnosing A.D. in the ID population. We continue to work with the Alzheimer's Association, providers and other state and private entities to create regional dementia diagnostic clinics to help facilitate early diagnosis and treatment of dementia and Alzheimer's Disease by clinicians with expertise with the ID population.
  • Ongoing work with ophthalmologists and optometrists to develop better eye examinations for individuals with intellectual disabilities and provision of a list of eye doctors willing and able to serve this population across the state.
  • Provision of training to ER staff in Northeast, Metro area and Central Massachusetts regarding interpreting behavior in order to diagnose acute health issues for individuals with intellectual disabilities when they arrive at the ER.
  • Provision of internship settings twice a year for fourth year nursing students from Simmons College in the care of people with intellectual disabilities in the community as part of their community nursing practicum.
  • The use of Tewksbury Hospital for individuals requiring short term rehabilitation prior to returning home. The facility has developed specialized expertise in supporting and treating individuals with intellectual disabilities.
  • Comprehensive dental services are offered through the Tufts Dental clinics around the state. The clinics with a cadre of specially trained dentists provide preventive and restorative services to the majority of individuals we support.
  • We support a dental loan repayment program which assists in attracting and retaining dentists serving individuals with disabilities.
  • Boston University School of Dental Medicine is in the final planning stages of beginning a special residency track to serve individuals with intellectual disabilities

IV. Task Forces/Committees

  1. A Task Force on young adults in need of intensive community based medical supports
    has been working on identifying issues and making recommendations on how best to support young adults in a variety of settings. To date the group has:
    • defined the population and projected numbers of individuals who will require on-going intensive supports
    • Identified services and supports deemed a high priority for continuation into adulthood, particularly for adult children remaining at home
    • made recommendations with respect to options for provisions of services and supports, including case management, day services, transportation, equipment and adaptations, in-home daily living and financial assistance.
    As a result of the Task Force recommendations, each of the 5 medically complex programs that we purchase, has had funds added to provide medical case management and care coordination for individuals between the ages of 18-25.
  2. Statewide Quality Council
    Comprised of agency staff, providers, family members, self advocates and other stakeholders, this Council reviews data and information, including that related to health and wellness, and makes recommendations to the Department about what actions should be taken relative to the needs identified through this data analysis. The Falls Prevention campaign was developed as a result of this Council's review of HCSIS data related to the high incidence of unplanned hospitalizations that were related to injuries from falls.
  3. Western Massachusetts Complex Needs Task Force
    This Task Force developed a manual for communicating with hospital staff during in-patient hospital stays as well as guidelines for supporting thorough discharge planning
  4. Plymouth Area Office
    The Plymouth Area Office Provides outreach to doctors and hospitals to support better communication between our providers and community health providers.
  5. Southeast Regional "Medical Safeguarding" Project
    This project provides care coordination and health care advocacy for individuals living in the Southeast.
  6. Northeast Regional Collaborative with Hospice Care Inc.
    This collaborative has worked successfully to develop systems to overcome obstacles so that individuals with intellectual disabilities, their families and caregivers can receive the physical, social and spiritual support offered by hospice services.
  7. Mortality Review Committees
    Mortality review committees exist at the Regional and Central level and reviews all deaths that meet the criteria for a full mortality review. This process enables us to identify patterns and trends relative to the causes and circumstances of individuals who have died in our programs and take action to decrease deaths in the future for possibly preventable conditions.

V. Clinician Resources

Many of our providers have registered nurses who provide oversight and coordination of health care services within their service constellation. In addition, every Area Office has a full time nurse who consults and coordinates care with human service and health care providers.

VI. Data

The Department utilizes a number of databases to track patterns and trends in the delivery of health care services. These include the Home and Community Services Incident System (HCSIS) which monitors incidents involving individuals served by us, the electronic health care record and the survey and certification database. Incidents tracked include those related to medication occurrences, hospitalizations, injuries and deaths. These systems allow us to collect information important to the health and wellness of individuals. Some examples are:

  1. Data collected from the survey and certification database regarding access to health and dental services shows that individuals served in programs licensed by us receive routine services at the following rates:
    • 96% receive an annual physical examination (compared to national average of 86%)
    • 93% receive an annual dental exam (compared to 78% in the Mass. General population) 64% have received an exam in the last 6 months (compared to national average of 53%)
  2. Data collected through HCSIS shows a reduction in deaths due to aspiration and sepsis over the last 3 years as indicated by our annual mortality report. This is as a positive trend and one that will continue to be monitored.

This information is provided by the Department of Developmental Services.