Kentucky's CHI Program of All-Inclusive Care for Children and their Families®
History
The CHI PACC® (CHI Program of All-Inclusive Care for Children and Their Families) model was developed by Children's Hospice International (CHI) as a more comprehensive way to care for children with life-threatening illnesses and their families. Federal Funds became available in 2000 through the Centers for Medicare and Medicaid Services for individual states, including Kentucky, to receive funds to develop CHI PACC® programs that would meet the needs of their state.
In Kentucky, a partnership was developed between Hospice of the Bluegrass, Hospice of Louisville, and the Kentucky Cabinet for Health Services, Department for Medicaid Services. The partners applied for grant funds and received funding in October of 2000. Funding for second and third years was also secured. The long-range goal of this project is the development of an enhanced service package for children with life-threatening illnesses/conditions and their families. The proposed service package will provide intensive support from the time of diagnosis (or at any point along the disease continuum) through the family's bereavement process.
Progress
During the first year of funding Kentucky PACC® conducted five parent focus groups throughout the state. The focus groups were held in Louisville, Lexington, Hazard, Covington, and Bowling Green. The goal of the focus groups was to find out more about the current system of care in Kentucky. Parents of children with life-threatening illnesses as well as parents who had lost their children to life-threatening illnesses were invited to participate and share their experiences.
Parents identified the following issues or needs: strain on marriage/relationship, a lack of attention to their child's educational needs, a lack of knowledge of resources, financial constraints, unmet spiritual issues, gaps in service, lack of transportation, lack of respite care, minimal support at time of diagnosis, little sibling support, and the overwhelming needs of a sick child. A barrier to receiving specialized pediatric care due to the geography of Kentucky was also identified. Centers of specialized pediatric health care are located in the urban area of the state. Parents living in rural areas are forced to drive long distances to these centers, go outside state lines, or do without specialized care. Parent focus groups were invaluable in designing Kentucky PACC®.
A second major activity conducted during the first year was the formation of a pediatric advisory committee. The committee is composed of healthcare professionals, parents and advocates, who serve as a steering committee to improve children's services in the Commonwealth of Kentucky. The committee developed the acronym HUGS (Helping "U" Get Support) as the name for the Kentucky PACC® initiative. The Pediatric Advisory Committee will continue to provide oversight to the development and implementation of HUGS.
Kentucky PACC® also developed a comprehensive statewide resource manual for families and professionals seeking resources for children with life-threatening illnesses and their families. As previously mentioned the need for easy identification of resources was identified by parents in the focus groups. The manual is available at www.hospicebg.com
HUGS Services
The HUGS program is currently under development. Comprehensive services will complement traditional Medicaid services by providing children with life-threatening diagnoses a more coordinated system of care. Services provided by an interdisciplinary team will include:
Care Coordination
Counseling
Spiritual Care
Nursing Care
Personal Care
Bereavement Care
Respite Care
In 2001 Hospice of the Bluegrass and Hospice of Louisville collected responses to a statewide Pediatric Educational Needs Survey. The responses confirmed a need and desire for more pediatric training. In response to the need, Pediatric Palliative Care: Rising to the Challenge, a statewide pediatric conference, was sponsored by HUGS in 2002. The conference introduced the concept of HUGS and also provided much needed specialized pediatric palliative care information to participants. In 2003, grant money will be used to sponsor a second statewide pediatric conference. Please contact either Hospice of the Bluegrass or Hospice of Louisville to find out more about the conference.
Estimating the size of the target population has been a difficult task. The Kentucky Department for Medicaid Services identified 442 children who died in 1998 from disease related deaths (the most recent vital statistics information available). The Kentucky Department for Medicaid Services estimates 207 (or 47%) of these children would have been eligible for Medicaid services. It is believed that these children would have been eligible for HUGS services. However, this data does not show disease prevalence.
Kentucky PACC® is now persuing talks with state Medicaid officials over development of a waiver to begin subsiding the CHI PACC® model.
Contacts: Donna Armstrong,MSW Kentucky PACC Co-Director
Email: darmstrong@hospicebg.com
Sherri Weinsenfluh, LCSW Associate Vice-President of Counseling Services
Email: sweinsenfluh@hospicebg.com
2312 Alexandria Drive
Lexington, KY 40504
859-276-5344 or 1-800-756-6005
Contact: Jeanette Osbourne, RN Kentucky PACC Co-Director
Email: josbourne@hospices.org
3532 Ephraim McDowell Drive
Louisville, Kentucky 40205-3324
502-456-6200 or 1-800-264-0521
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.
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