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CHI PACC UTAH®
Promoting Hospice and Optimal
Palliative Efforts
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 Hospoce International for its CHI PACC® Program. |
Utah's CHI PACC®project represents a multi-year collaborative planning effort. Parents, professionals and public servants worked together to design a program to meet the needs of all Utah families with children with life-threatening illness. Recently bereaved parents were surveyed to determine what about the current system worked for them and what needed improvement. Their responses mirrored those in many recent national reports on care for children at life's end.
It is important to preserve hope at all stages of the terminal illness. The focus of hope must inevitably change over time, from hope for cure to hope for a longer remission . . . to hope that the child can be cared for at home, to hope that the child will die without pain.
- Increase access to coordinated palliative care and support services.
- Promoting HOPE will cover current Medicaid eligible children and adolescents and expand coverage in phase two of implementation to include higher income groups.
- Make palliative care available from the time of diagnosis, regardless of treatment goals.
- Provide comprehensive information about diseases and resources so families can make informed decision about their child or adolescent's care.
- Offer a comprehensive array of support services to help families care for their child or adolescent at home, if they so choose.
- Offer traditional respite care provided by a home health agency or Family Choice respite care, where care is provided by a family member or other trusted person.
- Coordinate services between hospital and home to ensure integrated services.
- Help families access and navigate health insurance benefits.
- Help train more providers in pediatric care to deliver care directed to the unique needs of children and families.
Who is Eligible?
Any child from birth to age 18 who resides in Utah diagnosed with a life-threatening medical condition so serious, it is unlikely the child will survive childhood, as determined by the treating physician. Two levels of service will be offered. All children and adolescents who qualify medically will receive the first tier of services. Children with Medicaid coverage and those who do not qualify but have private insurance will be eligible for the second-tier of services. The Non-Medicaid group will be assessed a sliding fee based on family income.
Zachary, Sandy, Utah, died at age 6 from neuroblastoma.
Alexa from Sandy, Utah, died at age 6 from a heart defect.
Bryton from West Jordan, Utah, died at age 4 from neuro-axonal dystrophy.
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A Child with a diagnosis:
- for which a cure is possible, but not certain, (e.g. cancer);
- for which there is no known cure, but treatment may increase life expectancy and quality (e.g. cystic fibrosis, muscular dystrophy, HIV);
- for which treatment is palliative from the beginning (e.g. genetic or neurodegenerative disorders, Battens Tay-Sachs);
- which is not progressive but may cause life-limiting complications (e.g. severe cerebral palsy, brain trauma or damage).
General Design of Benefit Package
Promoting HOPE will offer a unique two-tier benefit package (A & B). This will give all families whose child or adolescent is diagnosed with a life threatening condition access to essential information and holistic support services. Services will be offered from the point of diagnosis until at least 18 months after the child's death, as needed.
Services Offered:
Package A - Information, Coordination & Referral
- Support for immediate needs
- Transportation Assistance
- Information & Referral to SupportiveResources
- Insurance Navigator
- Referral Counseling/Parent Support
Package B - Home Based Support
- Case Management& Plan of Care
- Nursing & OtherTherapeutic/Palliative Care
- Traditional RespiteFamily Choice Respite
- Pharmacy
- Palliative CareConsultation
- Counseling & Expressive Therapies
- Medical Supplies & Equipment
- Transportation
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Package A Outreach and Referral Services includes information, referral and an initial assessment. These services will be offered to any family whose child is diagnosed with a life-threatening condition and referred to the program, regardless of income.
Package B Home-Based Supplemental Services is designed to supplement the child's primary health insurance benefit. These services will be coordinated to assist the family in managing their child's care in a home setting. There will be no additional cost for the services in Package B to the family of children or adolescents who are eligible for Utah Medicaid insurance. However, there will be a sliding fee for the children and adolescents whose families have private insurance. The sliding fee and the families' obligation will be based on family income and family size.
Advisory Council Agencies Represented:
| Utah Department of HealthDivision of Health Care Financing |
Utah Parent CenterFamily Voices |
| Utah Department of HealthDivision of Community and Family Health Services |
Rocky Mountain Candlelighters forChildhood Cancer |
| Primary Children's Medical Center |
Heritage Hospice - Angel Watch |
| Intermountain Health CareIHC Home Care |
United Health CareMed Choice |
| Community Nursing ServicesKaleidoscope Kids |
Healthy "U" |
| Intermountain Health CareLDS Hospital Bereavement Program |
American Family Care |
| University of UtahHealth Sciences Center |
Utah State UniversityEarly Intervention Research Institute |
| Huntsman Cancer Institute |
The Partnership to Improve End-of-Life Care in Utah |
Community Based Links
Community Nursing Services -Kaleidoscope Kids
Family Voices of Utah
Huntsman Cancer Institute
Intermountain Health Care
Primary Children's Medical Center
Rocky Mountain Candlelighters for Childhood Cancer
University of Utah Health Sciences Center
Utah Department of Health
Utah's Medical Home Project
Utah Department of Health
DHCF, P.O. Box 143108, Salt Lake City, UT 84114-3108
801-538-9227 zsaunders@utah.gov FAX: 801-538-6638
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