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Accomplishments

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Children’s Hospice International 30 Years
Improving the Lives of Children with
Live-threatening Conditions & Their Families

Children’s Hospice International (CHI) is an award winning non-profit established in 1983 that has pioneered and promoted the idea that critically ill children should have access to hospice/palliative care along with curative care from the time their life-threatening illness has been diagnosed.

Children and families may now pursue curative and traditional hospice/home care services concurrently. CHI’s federal demonstrations – ChiPACC – allow for these expanded services to be covered under Medicaid; ultimately private insurance should follow suit.

CHI Accomplishments include

Defining Documents, including:

Definition of Children’s Hospice and Palliative Care, developed by CHI in 1983 with Barbara McCann, JCHO.

Glossary of Children’s Hospice Terms, 1985

Standards of Children’s Hospice & Palliative Care, 1990, developed by the CHI Scientific Review Board, Chaired by Constance Battle, MD, Veronica Feeg, PhD, RD, Bernice Katheryn Harper, Ph.D.

International Activities:

Technical assistance provided to over 44 countries

Outreach Missions to Minsk, Belarus and Hanoi, Vietnam

World Congresses

Technical Assistance to thousands of individuals, children’s hospitals, hospices and home health agencies around the world

Creating needed publications for families and healthcare providers

Publications

Approaching Grief, 1983

ChiPACC Implementation Manual, 1st Edition 2002, 2nd Edition 2003

Home Care for Seriously Ill Children: A Manual for Parents, 1st Edition 1979, 2nd edition 1984, 3rd edition 1991, 4th edition 2001

Hospice Care for Children, 1st edition 1993, 2nd edition 2001, 3rd edition 2009, Oxford University Press

Interdisciplinary Clinical Manual for Pediatric Hospice and Palliative Care, 1st edition 2004

My Life, Melinda’s Story, 1st edition 1985, 2nd edition 1987

The Purple Balloon, Chris Raschka, Random House Children’s Books, 2007

The Purple Balloon Educators Guide, Random House Children’s Books, 2007

The Purple Balloon Video, Random House Children’s Books, 2007

HEALTH POLICY CHANGES IN U.S.A.

Barriers to Coordinated Care

Prior to 2010, when the Affordable Care Act (ACA) was implemented, reimbursement guidelines in Medicaid required that a patient be within the last six months of life and forego all life-saving care before being eligible for hospice and palliative care. The ACA opened the door for coordinated care for terminally ill children, making them eligible for blended treatment (curative, palliative and hospice services) but only during the last six months of their life.

Overcoming the Barriers

Centers for Medicare & Medicaid Services (CMS) is a federal agency within the United States Department of Health and Human Services (DHHS) that administers the Medicare program and works in partnership with state governments to administer Medicaid, the State Children’s Health Insurance Program (SCHIP), and health insurance portability standards.  Individual states can apply to CMS to expand health coverage by seeking waivers of portions of the federal guidelines, in effect permitting them to offer the expanded medical services contemplated in ChiPACC.

This is where CHI has done some of its best and most important work.

  • With the leadership and assistance of CHI experts, CMS has identified several waiver vehicles that a state can use to request an expansion of the hospice benefit specifically for seriously ill children.  The process can be confusing and lengthy, so CHI plays an ongoing role as a technical expert by assisting states with the application process.
  • CHI has already helped five states – California, Colorado, Florida, New York, and North Dakota – secure waivers and implement programs following the CHI Coordinated Care Program model.
  • CHI is currently helping several other states through the CMS waiver process.
  • CHI has also provided technical assistance to more than 60 countries around the world as they took steps to include elements of hospice and palliative medicine in their pediatric care systems.

The Coordinated Care Program Works

Without access to hospice and palliative care for these youngest of patients, the only remaining option for families is to seek emergency medical treatment or costly hospitalizations.  Two of the states with established Coordinated Care Programs – Colorado and California – have demonstrated cost savings of between $1,700 and $1,800 per child per month or more than $20,000 per child, per year.  This is achieved through the very nature of comprehensive care model itself.

Hospice and palliative care focus on managing the symptoms of an illness, enhancing quality of life, and minimizing suffering.  The care team also helps families learn how to avoid or limit critical or life-threatening episodes.  In some instances, care providers are available 24 hours a day, 7 days a week to help answer questions or provide support.  They even provide the family with resources for medical care at or closer to home.

Thanks to the leadership of CHI and others in the field, a number of US Government Agencies, such as USAID, U.S. Department of State, PEPFAR, are interested in ChiPACC.

A number of foreign countries have shown interest in ChiPACC.

Website: www.CHIonline.org

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