News Release
New Jersey Health Decisions to Improve Care of People with Disabilities: Most Vulnerable New Jerseyans Often Receive Substandard Service
Verona, NJ , February 22, 2005.
New Jersey Health Decisions (NJHD) will use a new $100,000 grant from the State Department of the Treasury to improve the care of people with developmental disabilities who face life-threatening illnesses. Hospice and palliative care has been largely unavailable to this group, especially the 3,400 people under the guardianship of the State. Almost 60% of these individuals are over the age of 50.
New State regulations now encourage the provision of such care. For people with life-threatening illnesses, hospice and palliative care addresses the body, mind, and spirit and treats the patient's pain and other uncomfortable symptoms, not just medical needs.
"For people with developmental disabilities who may not understand their disease or its treatment, making them as comfortable as possible is the most human approach," says Gary L. Stein, J.D., M.S.W., Executive Director of New Jersey Health Decisions.
Under this newly awarded grant, NJHD is partnering with State agencies and community-based organizations to make this care a reality. According to Helen D. Blank, Ph.D., Project Director at New Jersey Health Decisions, "This is one of the very few projects around the country to make better end-of-life care a reality for this most vulnerable and overlooked group of citizens."
Our partnership – including the Saint Barnabas Hospice and Palliative Care Center, The Arc of Bergen and Passaic Counties, the North Jersey Developmental Center, Life Opportunities Unlimited, the State Bureau of Guardianship Services, the State Medicaid program, the Division of Developmental Disabilities, and Overlook Hospital – will help people with developmental disabilities receive hospice services wherever they live, whether in the community or in institutional settings. We will educate hospice staff on the special needs of people with intellectual disabilities, train residence staff on the hospice approach, monitor the hospice services provided, assure reimbursement for care, and evaluate the effectiveness of the services provided. Maria Roesler, MSN, CHPN, Director of Program Development at the Saint Barnabas Hospice states, "We are excited to be at the forefront in caring for this community. Hospice care should be available to all patients and families who need it."
As people with developmental disabilities live longer, they face the same chronic and terminal illnesses as the rest of the population, and hospice becomes a vital approach for compassionate end-of-life care. Alice Siegel, MA, Director of Community Residential Services at The Arc of Bergen and Passaic Counties notes, "Our residences care for people throughout the age span. With hospice support, we can continue to provide care to people in their own home, in their own community, and with staff with whom they are familiar."
A needs assessment conducted by NJHD and Sandra Howell-White, Ph.D., a medical sociologist from the Rutgers University Center for State Health Policy, documented what was known anecdotally – only a handful of individuals with developmental disabilities received hospice care.
Further, hospices were uncertain of the special needs of this population and reported communications barriers, and disabilities services staff did not understand their options for care.
In addition to overseeing the provision of hospice services, NJHD will develop education for State facilities, community groups, and professional audiences. Through its Disability Ethics Network, the organization also conducts ethics consults to help patients, families, and providers with making medical decisions about such serious issues as life-sustaining medical treatments, resuscitation orders, and disagreements regarding care.
Verona-based New Jersey Health Decisions works to improve end-of-life care and medical decision-making through training, outreach, and policy development.
For more information, contact: Gary L. Stein, J.D., M.S.W. Executive Director, New Jersey Health Decisions 973-857-5552; 201-452-7790 (cell) HealthDec@aol.com