S YNOPSIS OF HCP D ATA A broad-based look at The Health Care Program for Children with Special Needs Compiled by: Arthur McFarlane II, Epidemiology, Planning,

SYNOPSIS OF HCP DATAA broad-based look at The Health Care Program for Children with Special Needs

Compiled by: Arthur McFarlane II, Epidemiology, Planning, and Evaluation Branch

Presented to HPAC on May 22, 2013

ACKNOWLEDGEMENTS Carsten Baumann Angela Goodger Indira Gujral Dale Knochenmus Abby Laib Kristin McDermott Kelsey Mefford Jennie Munthali Ann Whitehouse Participants in the focus groups and key

informant interviews and respondents to the Family Survey and Specialty Clinic Survey

HCP Care Coordinators

INTRODUCTION

INTRODUCTION

The presentation will summarize the data gathered by five projects that the HCP Program and the Epidemiology, Planning and Evaluation Branch collaborated on between July 1, 2012 - June 30, 2013

The five projects are: The Annual CYSHCN Data Report The Annual Care Coordination Family Survey The Specialty Clinic Family Satisfaction Survey Care Coordination Focus Groups with current HCP

Partners Key Informant Interviews with counties not

implementing HCP care coordination

DESCRIPTION OF PROJECTS

The Annual CYSHCN Data Report

Data-driven view of the care coordination process to inform decision-making at the state and local levels

Designed to examine the first year of data since the new HCP Care Coordination model was implemented

Client-level data are aggregated to describe service delivered by care coordinators

Report reflects data from Nov. 1, 2011-Sept. 30, 2012

964 clients who received HCP Care Coordination with an action plan were included in this analysis

6,647 individuals were entered into the data system during the timeframe

THE ANNUAL CARE COORDINATION FAMILY SURVEY

Designed to assess family satisfaction with care coordination services

Survey was predominately a mail-delivered paper instrument administered January-February 2013

925 families who met care coordination criteria and had complete address information were eligible to be surveyed

828 surveys were delivered 97 surveys were undeliverable 178 surveys were completed The response rate was 21.5%

THE SPECIALTY CLINIC FAMILY SATISFACTION SURVEY

Designed to help understand the experience of families who receive specialty clinic services

Surveys are administered at clinics immediately following a visit and collected using a locked drop box at each location

Data were analyzed and reported for the first quarter of 2013

Data were collected at all nine specialty clinic sites

Of the 170 responses, 131 (77.1%) were returned at neurology clinics, 31(18.2%) at rehabilitation clinics and 8 (4.7%) at orthopaedic clinics

CARE COORDINATION FOCUS GROUPS WITH CURRENT HCP PARTNERS

LPHA representatives from small, medium, and large counties were asked to share their thoughts on how the HCP care coordination model is working and to provide recommendations for program improvements

Five focus groups were held over a two-month period

Each focus group was designed to address different aspects of care coordination

They were 90-120 minutes in length

KEY INFORMANT INTERVIEWS WITH COUNTIES NOT IMPLEMENTING HCP CARE COORDINATION

Designed to better understand why 23 of 56 counties opted to stop offering HCP model of care coordination services

Phone interviews were conducted with representatives from 19 of 23 counties

Participants were asked up to eight questions during a 30 minute interview

RESULTS AND CONCLUSIONS

PROJECT 1 : THE ANNUAL CYSHCN DATA REPORT

THE ANNUAL CYSHCN DATA REPORT

Clients are 60% -Male/40%-Female Median age of client is 4 years of age 73% spoke English/21% spoke Spanish 39% are Hispanic 12% needed an interpreter 30% are in single parent households Intake interviews were conducted in the

home 38% of the time; over the phone 34% of the time; in the office or specialty clinic 22% of the time

86% of the intake interviews were conducted by nurses






CYSHCN REPORT CONCLUSIONS

The CYSHCN database allows the program and the care coordinators an opportunity to look at the population being served in a consistent manner across LPHA’s throughout the state

A large percentage of the children in the system (85%) do not meet the “care coordination” criteria

It is much more difficult to measure the impact of information only versus the HCP model of care coordination with an action plan

CYSHCN REPORT CONCLUSIONS CONTINUED

The system has a large percentage of missing data in crucial demographic areas making it more difficult to ascertain if underserved communities are being served

Additional years of data will allow the program to address subgroups with greater certainty

PROJECT 2: THE ANNUAL CARE COORDINATION FAMILY SURVEY

THE ANNUAL FAMILY SURVEY














FAMILY SURVEY CONCLUSIONS

Responses indicate that most of the families have a doctor and health insurance for their child

Responses indicate that most of the families find doctors and health insurance without help from HCP care coordination

Satisfaction with care coordination appears to be generated by the medical coordination provided

There is room for improvement in the knowledge about, completion of and updating of action plans

Management of care was improved in 63.4% of the cases in the sample

PROJECT 3: SPECIALTY CLINIC FAMILY SATISFACTION SURVEY











SPECIALTY CLINIC CONCLUSIONS

Comments and responses showed that most respondents were pleased to have a clinic in their area so they did not have to drive to Denver

Comments were overwhelmingly positive about the doctors, nurses and staff of the clinics

Although the sample is self-selected there is a good distribution of respondents from different parts of the state and across dates in the quarter, lending validity and reliability to the results

PROJECT 4: CARE COORDINATION FOCUS GROUPS WITH CURRENT HCP PARTNERS

FOCUS GROUPS WITH CURRENT HCP PARTNERS – FG#1

Question: What are the best features of the current HCP care coordination model? Provides standards, structures and consistency

to the program and to the state Reports from CYSHCN are accurate and helpful Accommodates and supports a multi-disciplinary

team approach Action plan is good as a foundation Assessment guides the approach we are going to

take with the family Care plan can identify specific goals in a set

timeframe 6-month timeframe keeps us focused


Question: What are the challenges of the current HCP care coordination model? The data system is not easy to use for the things

we do – but we make it work Going through the questions to get to the point

where they say they don’t need care coordination is a challenge

We don’t have a way to track the cases where someone is calling for just information

We would like a way to more clearly define our roles to show the unique skills we bring to helping families

Refugee population is small but is high need and takes a lot of effort


Question: What other adjustments to the care coordination model does HCP need to incorporate? Need to look at a bigger model or framework Need to look at Affordable Care Act and RCCO’s

to create payment structure that is the same Need to gather data that care coordination is

evidence-based Data should be analyzed over time for change to

show impact of the program and to be used for quality improvement

Collect more data on the medical complexity of the cases


Question: How would you improve HCP’s care coordination services for children and youth with special health care needs? The data system seems to be working well but

we need information that tells us if what we’re doing is working

There could be a more direct referral system from schools to HCP

Need to distinguish ourselves – we don’t do home health care

Aren’t as involved with children by the time they reach “transition” and this can cause problems – not sure we have resources to fix it

FOCUS GROUPS WITH CURRENT HCP PARTNERS – FG#3 Question: Using the data available in the

CYSHCN database, how would you improve the effectiveness of the care coordination being delivered? The data base doesn’t affect care coordination.

Care Coordinators put information in, but it doesn’t provide anything to the LPHA.

The data system provides structure. It tells us where we are at any given time.

The database can be helpful to get referrals, but not usually in a timely manner

The local version of the assessment form is good for care coordination but not all the data goes in the system

FOCUS GROUP THEMES

Participants state there are clear benefits to the data system

Participants state that there is a need to adjust the tools used to collect the data

Participants are seeking clarified roles both in the program and in the community

Role with focus on clinical medical care coordination appears to be the unique niche

Data can be used to show improvement in cases and areas for quality improvement

FOCUS GROUP THEMES CONTINUED

Information only cases represent a large portion of the work but don’t count as care coordination and take time from those efforts

Participants see a connection between their work and school-based care for consulting, referrals and care coordination and believe the links between the two can be stronger

Complexity of cases and differences between LPHA’s makes standardization and statewide assessment difficult

“There is no way to measure the value of care coordination the way the system is set up now”

PROJECT 5: KEY INFORMANT INTERVIEWS WITH COUNTIES NOT IMPLEMENTING CARE COORDINATION

KEY INFORMANT INTERVIEWS WITH FORMER CARE COORDINATION PROVIDERS



KEY INFORMANT INTERVIEWS WITH COUNTIES NOT IMPLEMENTING CARE COORDINATION



KEY INFORMANT CONCLUSIONS

The interviews were conducted with individuals selected by the LPHA’s thus interviewees had different job duties in the organizations and varying levels of knowledge about different aspects of the opt-out decision-making process and clients receiving services

Issues of communication on funding and annual planning are themes noted in the interviews

A recurrent theme in the interviews was agency capacity

KEY INFORMANT CONCLUSIONS CONTINUED

Participants expressed capacity concerns around adequate staff to support care coordination and financial resources to implement the full model

All agencies expressed a desire to continue to serve their families’ needs

SOURCES

SOURCES

Analysis of the Children and Youth with Special Health Care Needs (CYSHCN) Data System-November 1,2011 thru September 30, 2012

Health Care Program for Children with Special Needs (HCP) – Family Survey – FY12 Results

HCP Specialty Clinic Survey and Data Tool Health Care Program for Children with Special

Needs (HCP) Care Coordination Services – HCP Focus Group Project

Health Care Program for Children with Special Needs (HCP) Care Coordination Services – Key Informant Interviews

PROJECT 4: ADDITIONAL SLIDES: CARE COORDINATION FOCUS GROUPS WITH CURRENT HCP PARTNERS

CARE COORDINATION FOCUS GROUPS WITH CURRENT HCP PARTNERS – FG#1

Question #1: What are the best features of the current HCP care coordination model? Provides standards, structures and consistency

to the program and to the state Reports from CYSHCN are accurate and helpful Accommodates and supports a multi-disciplinary

team approach Action plan is good as a foundation Assessment guides the approach we are going to

take with the family Care plan can identify specific goals in a set

timeframe 6-month timeframe keeps us focused


Question #2: What are the challenges of the current HCP care coordination model? The data system is not easy to use for the things

we do – but we make it work Going through the questions to get to the point

where they say they don’t need care coordination is a challenge

We don’t have a way to track the cases where someone is calling for just information

We would like a way to more clearly define our roles to show the unique skills we bring to helping families

Refugee population is small but is high need and takes a lot of effort


Question #3: Why have you made changes to the current HCP care coordination model and how have you made those adjustments? Compressed forms so they aren’t so lengthy Do a lot of educating on what HCP care

coordination is and what our role is Indicate at the 6-month mark how long families

will be on the program so that those who are used to being on the program indefinitely have the right expectations


Question #4: What other adjustments to the care coordination model does HCP need to incorporate? Need to look at a bigger model or framework Need to look at Affordable Care Act and RCCO’s

to create payment structure that is the same Need to gather data that care coordination is

evidence-based Data should be analyzed over time for change to

show impact of the program and to be used for quality improvement

Collect more data on the medical complexity of the cases


Question #5: In the process of making the model operational do you feel you've developed some promising and practical practices that the program should consider as they consider changes to the model? Each community has adapted the forms to meet

their needs and the needs of their families Need an orientation process for nurses coming in Need advocacy from the state to say that there

is a variety of care coordination, appropriate for different levels of cases based on complexity


Question #1: What distinguishes HCP’s care coordination with “information only” services from other care coordination/patient navigation services in your community? We have a reputation for having connections to

key players in the community and that reputation is different from others

As RN’s we look at care in a more medical way We look at individual and medical case

complications AND holistic family complications Mental health resources seem to be a large

missing piece in communities


Question #2: What distinguishes HCP’s care coordination with “an action plan” services from other care coordination/patient navigation services in your community? The action plan gives parents something to hold

on to beside documentation and the hope is it makes everyone more accountable

Care coordinators empower parents and center the care around the child

Need to bridge care coordination services with school-based systems and could act as consultants to them

Change the name and the concept that is wrapped around HCP and what the program does


Question #3: How would you improve HCP’s care coordination services for children and youth with special health care needs? The data system seems to be working well but

we need information that tells us if what we’re doing is working

There could be a more direct referral system from schools to HCP

Need to distinguish ourselves – we don’t do home health care

Aren’t as involved with children by the time they reach “transition” and this can cause problems – not sure we have resources to fix it


Question #4: What is the value of standardizing the care coordination service-delivery model across HCP’s statewide programs? Population we serve is too variable to standardize.

Complexity of needs and the number of needs is often different.

We're all different. Need minimum necessary requirements provided to the locals and what the state requires. After that, leave it up to the county to do what works for them.

Each county has different issues and won't be able to support it all. There are capacity issues. But can standardize in the area of data collection to prove outcomes in order to get $/funding/etc.


Question #5: How does HCP care coordination fit in with the role of local public health to promote health and prevent disease at the community level? Look at whole person, the whole family, the

whole community. We don't have blinders on and only look at the child.

Public health looks at the whole population of a certain area and fills gaps for the people that live in that county regardless of where they seek their primary health care.

CARE COORDINATION FOCUS GROUPS WITH CURRENT HCP PARTNERS – FG#3 Question #1: Using the data available in the

CYSHCN database, how would you improve the effectiveness of the care coordination being delivered? The data base doesn’t affect care coordination.

Care Coordinators put information in, but it doesn’t provide anything to the LPHA.

The data system provides structure. It tells us where we are at at any given time.

The database can be helpful to get referrals, but not usually in a timely manner

The local version of the assessment form is good for care coordination but not all the data goes in the system


Question #2: How would you do acuity outside of what we’re doing? There is no way to measure the value of care

coordination with the way the database is set up now

Seems like 2 phases: Phase 1: we input information into the database for the state. Phase 2: We are doing care coordination.

It is a frustration that we don’t have another database to put information from the assessment form into. We are doing a lot of work for the state, but with the intake interview, assessment and the hard copy of the action plan, it is too many steps and it’s a step backwards.

CARE COORDINATION FOCUS GROUPS WITH CURRENT HCP PARTNERS – FG#4 Question #’s 1 & 2: How can the assessment

process be made more effective and valuable? Should the intake interview and assessment processes be combined? State assessment form is cumbersome. There are too

many pages. LPHA changed the form because not all of the categories applied to all children and families in every situation.

The action plan is derived from the assessment. Is there a way to combine these? The assessment could pre-populate the action plan form.

Intake Interview and Assessment piece should be merged into one document/one conversation.

We need to be careful not to change too many things. Our LPHA has adapted quite well to the existing forms and procedures.


This focus group was a technical data assessment that was structured differently from the other focus group sessions. The primary goal was to restructure (either move, change or delete) questions on the intake interview. The secondary goal was to assure that data being reported to the LPHA’s is what they need

The results of this focus group were then fed into the Epidemiology, Planning and Evaluation data report using the CYSHN database

Documents

S YNOPSIS OF HCP D ATA A broad-based look at The Health Care Program for Children with Special Needs Compiled by: Arthur McFarlane II, Epidemiology, Planning,