1. CaCoon Program Orientation for New PHNs - Part 1
October 3, 2013

2. CaCoon Program Orientation – Two Webinars
Second Annual CaCoon Program Orientation
For PHNs New To CaCoon
#1 Webinar
October 3rd, 2013, 9am – 11am
Review CaCoon and Professional Practice
#2 Webinar
October 22nd, 2013, 9am – 11am
Review resources, documentation and evaluation

3. CaCoon Program Orientation Goal
…to increase the confidence and competence of newer CaCoon Public Health Nurses related to services for children and youth with special health needs.

4. Objectives for Today’s Webinar:
Review
History of federal and state programs for children and youth with special health needs (CYSHN)
identify one thing learned about CYSHN Title V
History and purpose of the CaCoon Program
identify the purpose of the CaCoon program
Public Health Nursing
identify public health nursing populations
CaCoon Program Eligibility and Standards
recognize how CaCoon clients are eligible for the program
know where to find the standards for CaCoon
CaCoon Public Health Nursing Practice
Understand two principles of Professional Growth Progression
Recognize risks in Therapeutic/Helping Relationships in CaCoon

5. History of federal and state programs
for children and youth with special health needs (CYSHN)
identify one thing learned about CYSHN history
History of federal and state programs for children and youth with special health needs (CYSHN)
HN Title V

6. History of Services to Children with Special Health Needs
1900’s: Statewide services delivered to a specific subset of CYSHN supported by the University of Oregon, later called OHSU, often free.
1935 Title V of the Social Security Act : Enabled each state to extend and improve services for locating crippled children, and provided for medical, surgical, corrective and other services and facilities for diagnosis, hospitalization and aftercare. (purpose)
Crippled Children’s Services separate from Maternal Child Health Services.
1989 Maternal Child Health Bureau (MCHB) began the block grant to the states.

7. Omnibus Budget and Reconciliation Act of 1989
1987 Federal MCH focus shifted to
community-based services
80 year time span
Omnibus Budget and Reconciliation Act of 1989
Redefined mission & function of State CSHCN programs
Care coordination added as a targeted service
Promote and provide family-centered, community-based, coordinated care for CSHCN
Facilitate the development of community-based systems of services
In 90 years went from direct service at tertiary care centers to community centered care coordination and the emphasis on building capacity to serve sychn at the local level.

8. 1989 New Definition of Children with Special Health Care Needs
Children with special health care needs (CSHCN) are defined as:
"those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally”
No longer ‘crippled children”
Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (MCHB)
Changing the definition changed the emphasis of action from child find and treatment to a comprehensive system of care which included children with special needs in their home communities while seeking to build capacity of local, regional and teriary care systems.

9. “Insurance” to assurance…
Since 1997 the conceptual framework for the services of the Federal Title V Maternal and Child Health Block Grant is envisioned as a pyramid with four tiers of services and levels of funding that provide comprehensive services for mothers and children, including children with special health care needs. The model displays the uniqueness of the MCH Block Grant, which is the only Federal program that provides services at all levels.
DIRECT
HEATH CARE
SERVICES:
(GAP FILLING)
Examples:
Basic Health Services,
and Health Services for CSHN
ENABLING SERVICES:
Examples:
Transportation, Translation, Outreach
Respite Care, Health Education, Family
Support Services, Purchase of Health Insurance, Care Management, Coordination with Medicaid, WIC, and Education
POPULATION-BASED SERVICES:
Examples:
Newborn Screening, Lead Screening, Immunization,
Sudden Infant Death Syndrome Counseling, Oral Health,
Injury Prevention, Nutrition
And Outreach/Public Education
Before 1989, Crippled Children’s Services were very different, with the direct service at the bottom, funded by federal dollars
INFRASTRUCTURE BUILDING SERVICES:
Examples:
Needs Assessment, Evaluation, Planning, Policy Development,
Coordination, Quality Assurance, Standards Development, Monitoring,
Training, Applied Research, Systems of Care and Information Systems

10. History, funding and purpose of the
CaCoon Program
identify the purpose of the CaCoon program

11. CaCoon started as pilot program 1987-25 years ago
CaCoon was established under a MCH SPRANS grant in 1987
(Special Projects of Regional and National Significance)
Public health nursing fit the target activities of the new MCH directive
Piloted in Four counties in , went statewide in 1992
Promatoras added in 4 counties with a high proportion of Hispanic families 1995
2010 recognized as a Promising Practice by Association of Maternal Child Health Programs
In 2012, CaCoon evaluation demonstrated effectiveness
Forward thinking people in Oregon Services to Children and Youth with Special Health Needs saw an opportunity to develop a community based system of care which would work with tertiary care for CYSHN and their families to build informed care coordination for CYSHN and their families through home visiting public health nursing./AMCHP defines “best practices” as a continuum of practices, programs and policies that range from emerging to promising to those that have been extensively evaluated and proven effective, i.e. best practice. 

12. Oregon Center for Children and Youth with Special Health Needs CaCoon = CAre COordinatiON
OCCYSHN contracts with County Health Departments to identify and provide PHN home visiting care coordination to families of CSHN purpose
Each county has a designated Public Health Nurse CaCoon Coordinator. Many have several PHNs serving CaCoon families along with Promotora and community health workers since 1991 have gone from 36 to 150 nurses
Each County is funded differently based on the projected number of children with special health conditions.
CHANGE IS COMING!

13. Funding for CaCoon: Title V Block Grant: At this time
Federal Maternal Child Health Bureau (MCHB) provides a block grant to each state
Federal dollars are matched with state dollars in a 4:3 ratio
70% of the combined funds are used for general MCH populations
30% of funds must serve children with special health needs (CSHN)

14. Funding for CaCoon: Title V Block Grant
General MCH dollars go to the Oregon Health Authority (OHA), Center for Prevention and Health Policy, to serve general populations through programs such as Babies First! and Maternity Case Management %
Children with Special Needs dollars go to Oregon Center for Children and Youth with Special Health Needs(OCCYSHN), located at OHSU for programs such as CaCoon or Child Development and Rehabilitation Center 30%

15. Funding for CaCoon
Contracts to local Health Departments (LHDs) from OCCYSHN (state dollars)
Targeted case management (Federal dollars w county match. This is changing)
County general funds (very limited)
Grants, other local sources of funding
CCO partnerships, with fee for services and contracts

16. OHSU/IDD/CDRC/OCCYSHN
CaCoon is one program within the Center for CYSHN, which is part of the Institute of Development and Disability at Oregon Health and Sciences University
OHSU/IDD/CDRC/OCCYSHN

17. Affordable Care Act and Title V CYSHN 2013
Federal funding for Title V changing
How: we don’t know
State of Oregon Health Transition
Many changes, not all known
POPULATION-BASED SERVICES
Examples:
Newborn Screening, Lead Screening, Immunization,
Sudden Infant Death Syndrome Counseling, Oral Health,
Injury Prevention, Nutrition
And Outreach/Public Education
Mandates to Title V agencies from MCH remain the same at this time with great emphasis on Care Coordination that ever!
INFRASTRUCTURE BUILDING SERVICES:
Examples:
Needs Assessment, Evaluation, Planning, Policy Development,
Coordination, Quality Assurance, Standards Development, Monitoring,
Training, Applied Research, Systems of Care and Information Systems

18. Practice, Standards and Eligibility
CaCoon Program
Practice, Standards and Eligibility
Identify one element of CaCoon PHN practice
Recognize how CaCoon clients are eligible for the program
Know where to find the standards for CaCoon
Identify a risk of boundary crossing in home visiting

19. Public Health Nursing An Element of CaCoon
Public Health Nursing is the practice of promoting and protecting the health of populations using knowledge from nursing, social and public health sciences
(APHA, Public Health Nursing Section, 1996.)

20. Public Health Nursing
Public health nurses integrate community involvement and knowledge about the entire population with personal, clinical understandings of the health and illness experiences of individuals and families within the population.

21. Cornerstones of Public Health Nursing
Population based
Grounded in social justice
Focus on greater good
Focus on health promotion and prevention
Does what others cannot or will not
Driven by the science of epidemiology
Organizes community resources
Long-term commitment to the community
Relationship based
Grounded in an ethic of caring
Sensitivity to diversity
Holistic focus
Respect for the worth of all
Independent action
Standard of practice defined by nurse practice law
Cornerstones of PH Nursing, Minnesota Department of Health, revised 2007

22. Public Health Nurses serve Vulnerable Populations*
Economic: poverty and link to hazardous environments and inadequate nutrition
Educational: ability to understand health information and make informed choices
Social: support system
Health status: physical, biological, psychological
Health risk: lifestyle, environmental
From the North Carolina Institute for Public Health
* Power differentials in systems of care increase vulnerability*

23. Children with special health needs a vulnerable population
Complex physical and developmental needs
73% of CaCoon clients have more than one risk factor (ORCHIDS data FY2010)
Difficulty accessing care because of finances, transportation, geography, health complexity
Families often living in poverty; Child’s condition requires difficult choices

24. From the North Carolina Institute for Public Health
CaCoon PHNs
Identify (outreach and case finding)
Link to health services (case manager)
Develop or revise programs to meet client needs
Educate on health promotion
Provide direct care
Advocate for programs and services to meet client needs
From the North Carolina Institute for Public Health

25. These interventions are not unique to public health nurses but are used by public health interventionists universally…
From University of Minnesota Public Health Intervention Wheel

26. CaCoon Care Coordination… our unique contribution
CYSHN care coordination within the context of
comprehensive nursing process
Data Collection-systematic, objective and subjective
Nursing Assessment-standardized
Plans of Care-focused on measurable outcomes
Monitoring/evaluating POC, effectiveness of interventions
Modifying plan of care as needed
Specific outcomes oriented
Interventions delivered within therapeutic nurse relationship
Standard Practice
You will hear this over and over: You must demonstrate the value of your worth through accurate billing and data collection, accurate and clear documentation and positive outcomes including health and welfare outcomes with client satisfaction for your service!

27. What is Care Coordination?
Care coordination is a process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care.
Committee on Children With Disabilities. “Care Coordination: Integrating Health and Related Systems of Care for Children With Special Health Care Needs.” Pediatrics (1999). Pediatrics Web. 11 January 2013 Accessed

28. Care Coordination…
provides timely access to services, continuity of care, family support, strengths-based rather than deficit-based thinking
is accomplished everyday by families with and for their children and youth, but support is beneficial
is in partnership with the family
requires critical funding and protected time
requires tested tools, strategies and advocacy
Care coordination is very time consuming!

29. CaCoon: More than Case Management
“Case Management” is a common role throughout communities and systems of care
Families with CYSHN often have multiple case managers
Each case manager provides services within the context of their employee goals, experience, knowledge and education
Case management might be viewed as gate keeping or restricting services
Families and CaCoon nurses must navigate the system without marginalizing roles
Case management can have negative connotations for families.

30. Skills needed for CaCoon:
Technical skills
screeners/assessments, documentation,
resource collection, travel, safety
Personal-Social Skills
family engagement, self awareness, cultural competence, personal/professional skills,
ability to ask for help
Critical Thinking Skills
developing plan, monitoring and adjusting the plan, anticipatory planning, practice management, self-management
We believe that children and youth with special health needs are best served with comprehensive nurse assessments to accurately inform the family, child and system of care related to the health and well-being of the CYSHN and that home visiting PHNs are uniquely qualified to identify strengths/resiliancy factors which support effective, efficient care coordination.

31. CaCoon Novice to Expert

32. CaCoon Novice to Expert

33. CaCoon is partnership to support coping and growth in difficult times
Acknowledge difficulties
Change brings resistance from many avenues
Change begins with planning and moves to action
Positive change happens when there is hope and optimism
about the future
5. Positive tone and persistent commitment to facilitating growth
supports change
Ability to recognize any movement toward change
motivates more change
Acknowledge early when supports are no longer needed
Recognize many people value the shared experience so much they will want to “stay in touch’ to share on-going success or
challenges they have over come
The interpersonal process of change the home visiting nurses support is unique. We are witnesses to the intimate struggle going on in a home. That is not a small thing. We enter the lives of families who are often in crisis, in normal and natural grief. We bring with us the respectful belief that they can survive, and perhaps thrive someday. Wherever our clients are, we honor their journey.

34. Interpersonal skills =
the helping relationship
First Competency: Self-knowledge
Second Competency: Strategic Vision
Third Competency: Risk-taking and creativity
Four competency: Interpersonal and communication effectiveness
CaCoon provides a therapeutic relationship
First Competency: Self-knowledge
Second Competency: Strategic Vision
Third Competency: Risk-taking and creativity
Four competency: Interpersonal and communication effectiveness
Fifth competency: The ability to inspire
CaCoon nurses must be people with excellent interpersonal skills. Often those without interpersonal skills have little self-awareness or knowledge of their limitations. The clue is their visits fail, people will not engage with them and there are often conflicts with co-workers and community partners who would be supports for their professional growth.

35. Two common circumstances can produce blurring of boundaries:
Over helping—doing for clients what they are able
to do themselves or going beyond the wishes/needs of clients
Controlling—asserting authority and assuming
control of clients “for their own good”
Narcissism—having to find weakness, helplessness,
and/or disease in clients to feel helpful, at the expense of recognizing and
supporting clients’ healthier, stronger, and more competent features
(Pilette et al., 1995)

36. CaCoon Eligibility BabiesFirst! / CaCoon Eligibility List
aka the “A/B” list
Use of the B90 code
No financial or health insurance eligibility limitations
CaCoon serves children birth through 20 years of age
Counties determining age priorities
The changing health care system in counties means you and your supervisors must stay current with your county system of care! Until told otherwise, CARRY ON!

37. Eligibility Criteria – CaCoon B Codes
Diagnosis
B1. Heart Disease
B2. Chronic Orthopedic Disorders
B3. Neuromotor disorders including cerebral palsy and brachial palsy
B4. Cleft lip and palate and other congenital defects of the head, face
B5. Genetic disorders, e.g. cystic fibrosis, neurofibromatosis
B6. Multiple minor anomalies
B7. Metabolic disorders, e.g. PKU
B8. Spina Bifida
B9. Hydrocephalus or persistent ventriculomegaly
B10. Microcephaly and other congenital or acquired defects of the CNS
B12. Organic speech disorders, e.g. dysarthia/dyspraxia
B13. Hearing Loss
B23. Traumatic Brain Injury
B24. Fetal Alcohol Spectrum Disorder
B25. Autism, autism spectrum disorder, e.g. PDD,Asperger’s
B26. Behavioral or mental health disorder with developmental delay
B28. Chromosomal disorders, e.g. Down syndrome
B29. Positive Newborn Blood Screen
B30. HIV, seropositive conversion
B31. Visual Impairment
Very High Risk Medical Factors
B16. Intraventricular hemorrhage (grade III or IV) or periventricular leukomalacia (PVL) Or chronic subdurals
B17. Perinatal asphyxia accompanied by seizures
B18. Seizure disorder
B19. Oral-motor dysfunction requiring specialized feeding program e.g. Failure to Grow, Organic-Non-organic (medical diagnosis), gastrostomy, nasogastric
B20. Chronic lung disorder, e.g. tracheostomies, ventilator
B21. Suspect neuromuscular disorder, e.g. abnormal Neuromotor exam at NICU Discharge
Developmental Risk Factors
B22. Developmental Delay
Other
B90. Other chronic conditions not listed
Also share information about A codes and Babies First.

38. B Codes in ORCHIDS and charting
Our state data system is only as good as the information entered
There can be multiple B codes with A codes
In BabiesFirst! there cannot be B codes.
In CaCoon there can be both A and B
The more codes entered, the more we know about the clients in CaCoon

39. CaCoon Minimum Standards of Program Performance
It is the responsibility of each nurse providing CaCoon services,
to ensure that program standards are met for each family served.
The local health department will assure initial contact with CaCoon referrals within 10
business days of receiving. Initial contact may be by telephone or other means.
2. If need the local health department establishes and maintains a triage system that acknowledges the most vulnerable children with special health needs. Priority is given to families with:
a. A newborn with a disability
b. A newly diagnosed infant/child with a disability
c. Children with increased nutrition risk (e.g., children with congenital cardiac defects, cleft lip and palate, or cystic fibrosis)
Families having difficulty accessing or coordinating their child’s care and services
The LHD CaCoon program meets a minimum number of visits per year.
Each LHD will be given the target number of annual visits that are expected.

40. CaCoon Minimum Standards of Program Performance, continued
4. Families considered part of the CaCoon Nurse’s active caseload receive home visits on a frequency related to assessed need, no less than one face to face contact every three months. PHN visiting will correspond to the needs of the client and family assessed and assumes a mixed population of tier.
5. All CaCoon Nurses performs or assures that children and their families receive the following minimum assessments (See Assessment Tools in Chapter 6):
a. Family assessment.
b. Developmental assessment (use of a developmental screen for this population would be selective and for the purpose of monitoring, teaching or documenting progress).
Child health assessment to include monitoring of vision and hearing (includes follow-up of hearing results from the newborn screening including hearing and vision screening).
Nutrition assessment – using CYSHN screening tool or equivalent.
Tier level assessment
Safety assessment appropriate for CSHN
Any PHN visiting a CaCoon client is considered a CaCoon nurse!

41. CaCoon Minimum Standards of Program Performance, continued
6 The client data record reflects evidence of care coordination, cultural competency and family partnership, and use of Tier Level data to develop a plan of care which is periodically reevaluated with the family and changed according to objective criteria or demonstrated and documented need. 7 PHNs serving CaCoon clients assure linkage to essential support and care services such as F2F, CCO ICM, PCP/Specialty Care, SSI, DD, MH 8. Encounter data is entered into the ORCHIDS database. 9 The LHD supervisor assures that CaCoon is represented at the county Local Interagency Coordinating Council (LICC) or planning group that assumes the mandate of LICC.

42. CaCoon Minimum Standards of Program Performance, continued
10 A CaCoon Nurse Coordinator is designated by the Nursing Supervisor (refer to CaCoon Subaward Contract Attachment C-1 for role expectations).
11 Counties will report child find activities which ensure families and community organizations are aware of services available through the local CaCoon program.
Counties not meeting one or more standards will write a plan of correction which they and OCCYSHN will monitor. Inability to reach and/or maintain standards may, at OCCYSHN’s discretion, result in loss of annual subaward contract renewal.
Filed at your local health department, refer to you manual

43. CaCoon Practice in action
You will manage your own practice
You will have your own clients
You will manage your own charts
You will assure your own capability to appropriately work with CaCoon clients and their families
You must ask for what you need to succeed

44. Case Finding: Referral
Common Referral Sources
WIC
Primary care provider
Hospital- could be NICU, well baby, other inpatient
Other LHD Clinics- immunization
Early intervention
EHDI
Common Referral Problems:
Not contacting the family within 10 days of referral
Not identifying the vulnerability of the client
Not staying in touch with the referral source

45. Pre-visit planning Review referral
Secure complete contact information
Determine if child has a specific and/or new diagnosis
Determine what services the child is already receiving
Determine urgency of referral
Clarify priorities
Seek supervisory support!

46. Pre-visit planning, cont.
Ensure you understand the child’s diagnosis
Find information about conditions
You do not need to know everything
You do need to know where to find the information
Anyone can do a simple web search-do a professional search!
Contact the family within 10 days, sooner if possible

47. Engaging Families telephone contact
The initial contact is critical to the establishment of a trusting relationship
Explain who you are, what you do and your professional boundaries
Explain the reason for the referral
Explain services and offer home visit
Ask if families have immediate concerns or other questions
Are you concerned about anything today or recently?
How is feeding working out? Follow the lead given.
Example: Thank you for taking my call, Mrs. Jones. I am a public health nurse, an RN. I have a referral from the WIC program which says you may be interested in home visits. Pause, let her speak….. Often I find families doing a great job with their child and frustrated with the complex system of care for the child. Sometimes families have financial concerns and I can find resources to help. Other times moms may want to understand medical language or a written medical report. I can help with that, too!. If you want, I can weight your baby and talk with you to health providers, link you with other families. I would like to bring you information about our Family Support Program and…….. May we set up an appointment today?

48. Engaging Families
Parent goal is to minimize their perceived vulnerability (Jack et al, 2005)
Overcoming fear
Building trust - mutual trust grows over time
Seeking mutuality - shared power, dropping the ‘expert’ nurse role
Affirming intrinsic abilities
Partnership in achieving goals
Jack, Susan M, DiCenso, Alba & Lohfeld, Lynne. “A Theory of Maternal Engagement with Public Health Nurses and Family Visitors.” Journal of Advanced Nursing (2005): 182–190. Journal of Advanced Nursing Web. 11 January 2013 Accessed
Ask you experienced or admired peers how they connect with families. Share about my experience w peer who had not case load because all her calls received refusal for visits.

49. The First Visit in the home
Use an interpreter if needed!
Welcome other people the parent may have invited
Engage the parent as a partner in helping their child
You are working with the parent, not delivering a
service to the parent
Explain what will happen during this and subsequent visits
Affirm the positive you see, search for it diligently!
Initial engagement BEGINS at the first contact. Do not expect to accomplish everything at once. Follow the lead of your contact, pace yourself. Often we are in a rush to DO something and families are reassured by our competency if we can satisfy a need immediately. Often weighing and measuring the child is your first chance to admire the baby and set a warm tone of shared power. Not you as the expert but you, the parent and the baby as a unit of compassion with mutual goals for health improvement. .

50. We will come back to this tool again in our next orientation on the 27th.
Used with permission. ©The Honor Society of Nursing, Sigma Theta Tau International

51. Getting to know CaCoon The CaCoon Manual CaCoon Library in LHD
Online resources
People in your community
Providers at tertiary centers
Your CaCoon Nurse Consultants
Your MCH Nurse Consultants
TIME!

52. We are all in the process of learning
Know and accept where you as a learner
Ask for what you need to be more effective
Vulnerable clients can be harmed through inappropriate ‘helping’, CaCoon’s goal is empowerment
Nurses can impede their professional growth and skill by not protecting professional boundaries.
Nurse practice law demands patient/client protection.
It is YOUR responsibility as the professional home visitor to take the lead in ‘doing no harm’

53. Questions? Next time topics: Care plan development Documentation
Resources
Other needs?

54. Questions?
Next webinar October 22nd, 9-11am Send questions, topics of interests for the 22nd Be watching for the survey monkey

55. CaCoon support to local health departments
State CaCoon Nurse Consultants for the 36 counties who:
monitor program services
evaluate data for 36 counties
provide program orientation
provide ongoing support
train PHN’s
work closely with the OHA/Center for Prevention & Health Promotion
We share a workforce with OHA

56. OCCYSHN Staff OCCYSHN Director CaCoon Nurse Consultant
Marilyn Hartzell M.Ed.
CaCoon Nurse Consultant
Candace Artemenko RN,BSN /
Administrative Assistant
Matthew Gonzalez, BA