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The New York State Department of Health and the Center for Hospice and Palliative Care's Pediatric End-of-Life Care Demonstration Program
Modeled after the Children's Hospice International Program for All-Inclusive Care for Children and their Families®(CHI PACC®) and underwritten by the U.S. Government grant to Children's Hospice International for its CHI PACC®Program.
Mission:
To provide a comprehensive and coordinated set of family centered services for children with life limiting illnesses that will maintain the child in the home and that will minimize care in institutions. With grant funding originally through the Centers for Medicare & Medicaid Services (CMS) and now through Children's Hospice International (CHI), the New York State Department of Health (NYSDOH) is pursuing the development of a CHI Program of All-Inclusive Care for Children and their Families (CHI PACC®). This program will be called the New York State Program for All Inclusive Care for Children (NYSPACC).
Background:
New York State has a wide variety of programs and services for children with serious health problems. However, as is the case in nearly all other states, very few of the most seriously ill children in New York State receive care in a hospice setting. In addition, while these children may be currently eligible for a variety of programs, there is currently no program that includes all the many coordinated services this population needs. In response to these problems, the Essential Care Program, the Pediatric Program of the Center for Hospice and Palliative Care in Buffalo, joined with the NYSDOH to explore mechanisms for extending the CHI PACC® model to a statewide program of end-of-life care for children. The Essential Care Program is a nationally recognized program with considerable expertise in the provision of end-of-life care to children and their families. Their expertise, together with the experience of NYSDOH staff, will guide the development of this program to meet the needs of New York's diverse regions and population.
Proposed Model of Care/Services:
The components of the program will be the same as those of CHI PACC®although the manner in which components are administered may differ based on geographical and community needs. The program will be modeled after the Essential Care Program that provides a continuum of care between hospital and home and has a successful history of caring for children and their families with life-limiting illnesses. For more information on the Essential Care Program, visit their website at www.essential-care.org.
The core CHI PACC®services will include: Care Coordination, Creative Arts and Therapies (which include Child Life Specialist services), Social Work/Counseling, Spiritual Care, and traditional Hospice services such as Respite and Bereavement.
Target Population:
The demonstration will serve Medicaid children with selected life-limiting illnesses. In consultation with the Essential Care Program and children's care providers around the state, the most frequent diagnoses for children with life-threatening illnesses were identified and will be used for initial eligibility criteria. These diagnoses include malignancies and selected cardiovascular, respiratory, metabolic anomalies, as well as other congenital defects. Other eligibility criteria include age, children will be 0 - 18 years of age, Medicaid eligibility, and residence in one of the counties identified to provide services.
Progress:
Since 2001, DOH in partnership with Essential Care and the Hospice and Palliative Care Association of New York State (HPCANYS), has:
- Conducted a statewide web-based needs assessment of children and the families of children with life-threatening illnesses. Over 50 professional experts in children's palliative care needs were identified and asked to rate the most important needs of children with life-limiting illness, and then to separately rate the most important needs of the families of these children. The needs assessment was conducted by Dr. James Donnelly at the University of Buffalo. The attached PowerPoint presentation is a general summary of the larger needs assessment that was conducted. Read New York State's Needs Assessment Summary (PDF). A more detailed summary of the project can be obtained by calling the New York State program contacts named below.
- Established a Pediatric Advisory Group with the cooperation of the HPCANYS. Over twenty experts in pediatric care in NYS were identified and have met quarterly to identify experts for inclusion in the children and family needs assessment, identify barriers to providing palliative care, and identify potential providers for a NYSPACC.
- Worked collaboratively with CHI and CMS to ensure conformity with the CHI model of care and federal regulations for operation of a CHI PACC®demonstration program.
- Analyzed communication between Essential Care team members and between the team members and families they serve to detect problem areas and improve communication. Results will be used to develop training modules for NYSPACC providers.
- Conducted an analysis of service utilization and cost for the population who might be served by a NYSPACC. An actuarial analysis, using NYS Medicaid claims data, was completed in February 2003. Children who died in NYS hospitals within the past 5 years and who had one of the diagnoses that would make them eligible for services, are the subjects of the analysis.
- The analyses include a general description of service utilization and the total costs of each service, as well as a cost model that compares the cost of services for this population in the current Medicaid program to costs currently incurred for patients of the Essential Care program.
- Convened a PACC workgroup comprised of providers, State Medicaid, DOH program representatives and grant staff to identify the potential for housing the PACC program in an existing Medicaid home and community-based program, and, to propose a comprehensive program of services similar to the Essential Care Program model.
- Expanded the HPCANYS website to capture providers of pediatric hospice and palliative care services. Visit HPCANYS.
Next Steps:
New York State is currently pursuing several initiatives geared to restructuring parts of the long-term care system. Various mechanisms are being considered, such as a broad waiver that would provide the necessary flexibility for this restructuring. The work done on the CHI PACC® demonstration since 2000 has generated awareness of the need for and cost of providing quality services to children with life-threatening illnesses and their families and possible models to provide those services. The PACC®
is under consideration as one component of this broader waiver program.
Questions and comments may be directed to:
Michael Lindsey, Ph.D.
Principal Investigator
Division of Home and Community Based Care
New York State Department of Health
161 Delaware Avenue
Delmar, New York 12054
(518) 478 -1023
mll01@health.state.ny.us
or
Deb Henderson
Project Director
(518) 478-1023
deh05@health.state.ny.us
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